| 1. |
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| 2. |
- Bergqvist, Lena, 1958, et al.
(författare)
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Evidence of Construct Validity for the Modified Mental Fatigue Scale When Used in Persons with Cerebral Palsy
- 2020
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Ingår i: Developmental Neurorehabilitation. - : Informa UK Limited. - 1751-8423 .- 1751-8431. ; 23:4
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: Fatigue impacts negatively on everyday activities in individuals with cerebral palsy (CP). More knowledge is needed about how mental fatigue is manifested in this target group. The purpose of this study was to gather evidence about the validity of the modified Mental Fatigue Scale (m-MFS) in adults with CP. Methods: Mixed sequential exploratory design. The respondents were ten persons aged 22-56 with CP (MACS I-II). Results: The respondents perceived the m-MFS as easy to read and understand. Its structure was characterised as straightforward and the text of the rating options was deemed to assist identification with life situations. Very good agreement was seen between the respondents' and the instrument designers' intended meaning for the items in the m-MFS; the weighted kappa was 0.92. Conclusion: This study showed evidence of construct validity, based on response processes and content, for use of the modified MFS in adults with CP.
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| 3. |
- Bergqvist, Lena, 1958, et al.
(författare)
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Experiences of occupational performance in young adults with cerebral palsy
- 2018
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Ingår i: World Federation of Occupational Therapists (WFOT) 2018, abstract No 1916.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- The young adults with cerebral palsy (CP) consider that, despite life being so demanding, it is important to perform occupations themselves because "When I do, I become someone". Hence, it is necessary to advance intervention methods based on personally important occupations to enable individuals with CP to find their own way of occupational performance to promote health. Further research is needed to enhance individuals with CP to perform everyday occupations without too much struggle.
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| 4. |
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| 5. |
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| 6. |
- Bergqvist, Lena, 1958, et al.
(författare)
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Unga vuxna med cerebral pares uppfattning av kognitiva förmågors påverkan på aktivitetsutförande i vardagen
- 2019
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Ingår i: Arbetsterapiforum 2019 Abstrakt ID: 10388.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Preliminära resultatet visar att personer med CP med god motorisk och intellektuell förmåga ofta upplever problem vid utförande av vardagliga aktiviteter på grund av kognitiv/exekutiv svårigheter. För att förstå de problem som varje individ har så kan modellen the Model of the Process of Doing vara ett bra redskap.
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| 7. |
- Bergqvist, Lena, 1958, et al.
(författare)
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When I do, I become someone: experiences of occupational performance in young adults with cerebral palsy
- 2019
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Ingår i: Disability and rehabilitation. - : Informa UK Limited. - 1464-5165 .- 0963-8288. ; 41:3
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Tidskriftsartikel (refereegranskat)abstract
- Persons with cerebral palsy, even if they have relatively good motor functions, have a lower level of independence and participation in everyday activities than persons of the same age without disabilities. However, there are few descriptions of how persons with cerebral palsy themselves perceive their performance of activities in everyday life. The aim of this study was to describe the perceptions that young adults with cerebral palsy have of occupational performance in everyday life.This qualitative interview study includes 10 participants with cerebral palsy classified with Manual Ability Classification System level I-II, aged 19-30 years. The data were analyzed using a phenomenographic approach.The interviews resulted in five categories: "Important to do"; "Demanding but can be facilitated"; "Excludes or includes"; "Diminishes me or makes me grow"; and "Comes at a price".The young adults with cerebral palsy consider that, despite life being so demanding, it is extremely important to perform activities themselves and to feel included, as this enables personal growth. Hence, it is necessary to advance intervention methods based on personally important activities to enable individuals with cerebral palsy to find their own way to perform activities. Further research is needed to increase opportunities for individuals with cerebral palsy to perform everyday activities without too much fatigue and struggle. Implications for Rehabilitation For young adults with cerebral palsy it is extremely important to perform everyday activities independently; by DOING activities they form their identity. Intervention models aimed to enable persons with cerebral palsy to be involved and find their own way to perform everyday activities should be emphasized. Attention must be paid to how mental fatigue is manifested in persons with cerebral palsy. To build self-awareness and self-efficacy, individuals with cerebral palsy need information, early in life, about cerebral palsy and the multifaceted difficulties the disability might lead to.
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| 8. |
- Bergqvist, Lena, 1958, et al.
(författare)
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When I do, I become someone: experiences of occupational performance in young adults with cerebral palsy
- 2017
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Ingår i: VGFOUSA-702441, ISTAR.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Introduction Performance of daily activities and participation are often influenced throughout life in individuals with cerebral palsy (CP), even when the person has fairly good motor functions, and executive dysfunctions may also have an impact on performance in this group. However, it has rarely been described how persons with CP themselves perceive their performance of daily activities. Aim The aim of this study was to describe the experiences that young adults with CP have of occupational performance in everyday life. Methods Qualitative interview study with ten participants with CP, MACS I-II, aged 19-30 years. The data were analysed using a phenomenographic approach. Results The interviews resulted in five categories of perceptions of occupational performance, i.e doing: “Important to do”; “Demanding but can be facilitated”; “Excludes or includes”; “Diminishes me or makes me grow”; and “Comes at a price”. Whether doing diminished the participants or made them grow depends on the outcome of doing. When performing is too demanding and/or makes the participants feel excluded, they felt diminished as human beings. Performance that is facilitated and/or provides a sense of inclusion promotes personal growth. The participants pay a high price in terms of physical deterioration, pain, stress, and fatigue in their efforts to become who they want to be through doing. Conclusions The young adults with CP consider that, despite life being so demanding, it is extremely important to perform daily activities themselves and to feel included, as this makes them grow as human beings. Person-centred intervention methods based on personally important activities should be tested in order to meet the persons’ wishes and needs in their efforts to grow through DOING. Further research is needed to develop evaluation methods of how mental fatigue manifests in individuals with CP. The multifaceted difficulties to which CP often leads should be communicated to the persons themselves to enhance their self-awareness and give them the opportunity to explain their capabilities to others.
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| 9. |
- Bergqvist, Lena, 1958, et al.
(författare)
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When I do I become someone - young adults with cerebral palsy experiences of occupational performance and participation in daily life.
- 2016
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Ingår i: International Conference on Cerebral Palsy and other Childhood-onset Disabilities Stockholm 1–4 June 2016, Abstract book.
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Konferensbidrag (refereegranskat)abstract
- Background: Studies have shown that persons with cerebral palsy (CP), even if they have good hand function and are able to move independently, have a lower level of independence and participation in daily life than persons without disabilities in the same age. In the interaction between the person, environment and activity the perception of participation occurs. No studies can be found showing how young adults with CP perceive their ability to perform activities and its relation to their participation in everyday life. Aim: To investigate how young adults with CP perceive their ability of occupational performance and their participation in everyday life. Method: A qualitative interview study, with a Phenomenographic approach, with 10 persons with CP (MACS I-III) in the age of 18-30 years, in the region of Västra Götaland, Sweden. Result: Preliminary result show that young adults with CP perceive their occupational performance as very important in life, and that it is crucial to perform activities yourself and in the same way as others. The persons consider that occupational performance can affect selfesteem, self-image and self-confidence, and is viewed to help young adults to grow as person. Occupational performance is experienced to create feeling of affiliation or exclusion, depending on the possibility to be a part of an activity situation or how the people in the environment act. To perform activities describes as very demanding, especially cognitively, but with knowledge, compensation, adaptation, support and self-motivation it becomes possible. The persons describe that, even if it becomes possible, the occupational performance has a high price in form of motor impairment, pain, mental and physical fatigue, which can affect the possibility to continue performing activities. Conclusion: Young adults with CP consider that despite the fact that life is so demanding, it is important to perform activities yourself, because "When I do I become someone”.
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| 10. |
- Bergqvist, Lena, 1958, et al.
(författare)
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When I do I become someone - young adults with cerebral palsy experiences of occupational performance and participation in daily life.
- 2016
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Ingår i: COTEC-ENOTHE Congress, Abstract book.
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Konferensbidrag (refereegranskat)abstract
- Background: Studies have shown that persons with cerebral palsy (CP), even if they have good hand function and move independently, have a lower level of independence and participation in daily life than persons without disabilities in the same age. The aim of the study was to investigate how young adults with CP perceive their ability of occupational performance and their participation in everyday life. Method: Qualitative interview study with 10 persons (18-30 years old) with CP (MACS I-III), in the western Sweden. Results: The young adults with CP perceived their occupational performance as very important. It is crucial for them to perform activities in the same way as others. To perform activities was described as very demanding, especially cognitively, but with knowledge, compensation, adaptation, support and self-motivation it became possible. Occupational performance was experienced to create feelings of affiliation or exclusion, depending on people’s conduct and the possibility to participate in activity situations. The persons considered that occupational performance can affect self-esteem, self-image and self-confidence, and is viewed to help them to grow as persons. Still it has high price in form of physical deterioration, pain, stress, mental and physical fatigue. Conclusion: Young adults with CP consider that despite the fact that life is so demanding, it is important to perform activities themselves, because "When I do I become someone”. Application to Practice: Knowledge from the study will provide conditions for interventions based on the understanding that persons with CP need balance in their daily life without giving up "doing".
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| 11. |
- Dosa, Nienke P, et al.
(författare)
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Spina bifida global learning collaborative : Educating the next generation of clinicians, researchers, and advocates
- 2023
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Ingår i: Journal of Pediatric Rehabilitation Medicine. - : IOS Press. - 1874-5393 .- 1875-8894. ; 16:4, s. 657-663
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: This project aimed to launch an international learning community to guide the development of a spina bifida (SB) curriculum for global health trainees.METHODS: Using a descriptive study design, a convenience sample of SB curricula were identified in 2022-23 by members of the Spina Bifida World Congress Outreach Committee and evaluated during a series of monthly Zoom calls to discuss SB education in a global health context. Participants included (1) leadership from the ReachAnother Foundation, (2) invited panelists from the Spina Bifida World Congress Global Health Symposium, and (3) global health students and preceptors. Education initiatives in Ethiopia, Sweden, Argentina, Ecuador, and the United States were evaluated vis-à-vis format and content.RESULTS: All of the education initiatives referenced the framework of the World Health Organization International Classification of Functioning, Disability and Health. Formats varied and included both virtual and interactive workshops, print materials, videos, and guides for small group discussion. Content addressed four domains: Folate Prevention, Neurosurgical Training, After Care, and Data Collection. A multidisciplinary approach, partnerships with families, and workforce pipeline training were identified as guiding themes for educating the next generation of SB researchers and clinicians in global health settings.CONCLUSION: The Spina Bifida Global Learning Collaborative is a transnational group of advocates, clinicians, and investigators whose mission is the advancement of SB-related global health education. Lessons learned from the collaborative are being leveraged to develop a global health curriculum for learners, which may improve services for individuals with SB around the globe.
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| 12. |
- Eriksson, Britt-Marie, et al.
(författare)
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Daily activity performance in congenital and childhood forms of myotonic dystrophy type 1: a population-based study
- 2020
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Ingår i: Developmental Medicine and Child Neurology. - : Wiley. - 0012-1622 .- 1469-8749. ; 62:6, s. 723-728
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Tidskriftsartikel (refereegranskat)abstract
- Aims To identify and describe the profile characterizing motor and process skills during daily activity performance in individuals with congenital and childhood forms of myotonic dystrophy type 1 (DM1) and to investigate differences in performance between subgroups. Method Sixty participants (34 males, 26 females, mean age=17y 8mo, SD=6y 0mo, range 5y 8mo-29y 0mo) were divided into severe congenital (n=9), mild congenital (n=20), and childhood (n=31) DM1 subgroups. Daily activity performance was evaluated using a standardized observational instrument: the Assessment of Motor and Process Skills. Results Deficits in performance were more pronounced in process than motor skills. Performance more than 2 SDs below age-specific norms was seen in 65% of participants for process skills and 33% of participants for motor skills. The cut-off scores indicated a potential need for assistance in daily activities for 79% of participants older than 18 years of age (n=28) due to deficient process skills. Interpretation Extensive deficits in daily activity performance were found in congenital and childhood forms of DM1, mainly owing to deficient process skills. Such skills impact on the ability to perform daily activities and could explain dependency in individuals with DM1. Process skills should be considered when evaluating daily activity performance. What this paper adds Young people with myotonic dystrophy type 1 show deficits in motor and process skills when performing daily activities, compared with normative data. Deficits in process skills were more pronounced than deficits in motor skills.
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| 13. |
- Eriksson, Britt-Marie, et al.
(författare)
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Intervention with hand orthosis: experience from boys with Duchenne muscular dystrophy and their parents
- 2023
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Ingår i: Disability and Rehabilitation. - 0963-8288.
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Tidskriftsartikel (refereegranskat)abstract
- PurposeTo identify and describe possible ways of experiencing an intervention with hand orthoses in a study group including boys with Duchenne muscular dystrophy (DMD) and their parents. To capture the experiences of the persons directly involved as well as their family members.Material and methodsEight boys with DMD (aged 8-21; median age 17.7) and five of their parents were interviewed immediately post-intervention. Additionally, follow-up interviews were later performed with five boys and three parents.ResultsTen categories of intervention experiences emerged and were allocated to three aspects: "Prerequisites in the treatment situation", "The intervention makes a difference" and "Instilling hope for the future". The requirements for intervention success include co-operation with parents and hand orthoses with a good fit. Maintained or increased joint mobility, reduced pain and improved occupational performance were experienced.ConclusionThe boys and parents perceived that the intervention with hand orthoses could counteract the deterioration of the boys' hands. This instilled hope of preserving occupational performance throughout life. They also considered that a good hand-orthosis fit, appropriate adjustments to daily routines and good co-operation with the people around them were important for the intervention to be and remain successful. Preserving the ability to perform activities with the hands is of paramount importance for boys with Duchenne muscular dystrophy and their parents.Intervention with hand orthoses counteracts deterioration of the hands.Successful treatment with hand orthoses requires that specific prerequisites in the treatment situation are met, that the treatment makes a difference for activity performance and that it instils hope for the future when it comes to performing meaningful activities.
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| 14. |
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| 15. |
- Peny-Dahlstrand, Marie, 1953, et al.
(författare)
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Potential benefits of the cognitive orientation to daily occupational performance approach in young adults with spina bifida or cerebral palsy: a feasibility study
- 2020
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Ingår i: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 42:2, s. 228-239
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Tidskriftsartikel (refereegranskat)abstract
- © 2018, © 2018 Informa UK Limited, trading as Taylor & Francis Group. Purpose: People with cerebral palsy (CP) or spina bifida (SB) often struggle to perform everyday-life activities. Both groups frequently also have difficulties in creating and using strategies effectively when performing tasks. The cognitive orientation to daily occupational performance (CO-OP) Approach combines the learning of cognitive strategies with task-specific approaches through a client-centred procedure. The aim of this study was to investigate whether the CO-OP Approach is feasible for and potentially beneficial to adolescents and young adults with CP or SB in Sweden by analysing four areas of feasibility (acceptability, efficacy, adaptation, and expansion). Methods: Exploratory multiple-case study using mixed methods. Ten persons aged 16–28, five with each condition, participated in an intervention period. Assessments were performed on three occasions: baseline, post-intervention, and six-month follow-up. Results: The result demonstrates that the CO-OP Approach has the potential to enable adolescents and young adults with either condition to achieve personal goals and to enhance their planning skills and their ability to use strategies when performing activities. This approach is also compatible with the core values of habilitation in Sweden and was found by the participants to be highly meaningful and useful. Conclusions: The CO-OP Approach is feasible for adolescents and young adults with SB or CP in Sweden.Implications for rehabilitation The Cognitive Orientation to daily Occupational Performance •is a feasible approach for adolescents and young adults with spina bifida and with cerebral palsy. •is a promising approach when it comes to enabling the achievement of personal goals. •might have potential to enhance executive functioning through strategy use. •is in line with the fundamental core values of disability rights of inclusion, empowerment, and participation.
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| 16. |
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| 17. |
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| 18. |
- Öhrvall, Ann-Marie, et al.
(författare)
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Barns aktiviteter i dagligt liv
- 2016
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Ingår i: Arbetsterapi för barn och ungdom. Eliasson, Ann-Christin, Lidström, Helene & Peny-Dahlstrand, Marie (red.). - Lund : Studentlitteratur. - 9789144092485 ; , s. 145-193
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Bokkapitel (övrigt vetenskapligt/konstnärligt)
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| 19. |
- Öhrvall, Ann-Marie, et al.
(författare)
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Cognitive Orientation to Daily Occupational Performance (CO-OP) för unga personer med ryggmärgsbråck och cerebral pares
- 2017
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Ingår i: Arbetsterapiforum, Malmö 10-12 maj 2017, 170502-258-M.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Bakgrund: Delaktighet uppstår i samspel mellan personen och dennes omgivning i en aktivitet. Aktivitetsutförande kräver både motoriska och exekutiva förmågor. Studier har visat att delaktighets- och självständighetsnivå ofta är låg hos individer med medfödda funktionsnedsättningar som cerebral pares (cp) och ryggmärgsbråck (rmb) beroende på såväl motoriska som exekutiva svårigheter Inom Svensk habilitering används för närvarande inga metoder, riktade till personer med cp och rmb, som fokuserar på att öka individens exekutiva färdigheter i aktivitetsutförande, dvs. att processa en aktivitet från start till mål. Cognitive Orientation to daily Occupational Performance (CO-OP) är en behandlingsmetod som baseras på att personen sätter sina egna mål. Strategier för utförande och problemlösning identifieras av personen själv i samverkan med behandlaren. Syfte: Syftet var att undersöka om CO-OP förhållningssätt är effektivt för att uppnå självidentifierade mål, förbättrad självupplevd delaktighet och exekutiv förmåga hos unga personer med ryggmärgsbråck eller cerebral pares i svenskt kontext. Metod: Tio personer, 5 personer med cp och 5 med rmb, i åldern 16-28 år deltog i en 10 veckors intervention med CO-OP. Baslinjemätning och bedömning direkt efter avslutad intervention samt långtidsuppföljning efter 6 månader gjordes med utfall på alla ICF-nivåer. Deltagarna intervjuades efter avslutad intervention om sina upplevelser av hur intervention med CO-OP påverkat deras vardag. Resultat/preliminärt resultat: Preliminära resultat visar avsevärd förbättring i självskattat utförande av målen, med en median på 5 nivåers ökning på en 10-gradig skala. Delaktighet skattades högre av majoriteten. Exekutiv förmåga, både självskattad och bedömd, förbättrades framförallt när det gällde att planera och lösa problem. I intervjuerna beskrev deltagarna en ökad självtillit när problemlösningsförmågan förbättrades. Slutsats: CO-OP är en lovande metod, som ger ökad möjlighet till aktivitetsutförande hos personer med cp och rmb.
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| 20. |
- Öhrvall, Ann-Marie, et al.
(författare)
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“IF I HAVE TROUBLE DOING SOMETHING, IT IS NOT A FAILURE, IT IS JUST MAKING A NEW PLAN” ENHANCING PARTICIPATION IN DAILY LIFE THROUGH COGNITIVE ORIENTATION TO DAILY OCCUPATIONAL PERFORMANCE (CO-OP) IN YOUNG PERSONS WITH SPINA BIFIDA OR CEREBRAL PALSY
- 2016
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Ingår i: COTEC-ENOTHE Congress, Abstract book.
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Konferensbidrag (refereegranskat)abstract
- Background: Participation occurs in the interaction between the person and the environment in activity. Performing an activity requires motor function and executive function. Research shows that persons with Spina Bifida(SB) and with Cerebral Palsy(CP) have activity and participation restriction due both motor- and executive dysfunctions. The Cognitive Orientation to daily Occupational Performance(CO-OP) approach guides the persons to master their own activity goals by using strategies for performance and problem-solving discovered by the person with guidance from the therapist. The objective was to investigate if the CO-OP approach is effective for achieving self-identified goals and improvement in self-perceived community participation for young persons with SB or CP. Method: Ten young persons (16-28 y) participated in a 10 week CO-OP treatment period; 5 with CP and 5 with SB. Evaluations were carried out on baseline, directly after and 6 month after the treatment with outcomes on all ICF-levels. Experiences of the CO-OP approach were captured with interviews. Results: Preliminary results show considerable improvement in self-rated performance of the goals, with a median of 5 levels increase on a 10-level scale. Both self-rated participation and executive ability to plan and stay focused was rated higher by the majority. In interviews feelings of higher self-efficacy were expressed as participants problem-solving ability increased. Conclusion: CO-OP is a promising approach to achieve personal goals and enhance participation through strategy use in young persons with SB or CP. Application to Practice: CO-OP approach provides the opportunity for persons to master everyday life problems by themselves.
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| 21. |
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| 22. |
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| 23. |
- Öhrvall, Ann-Marie, et al.
(författare)
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"With CO-OP I'm the boss" - experiences of the cognitive orientation to daily occupational performance approach as reported by young adults with cerebral palsy or spina bifida.
- 2020
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Ingår i: Disability and rehabilitation. - : Informa UK Limited. - 1464-5165 .- 0963-8288. ; 42:25, s. 3645-3652
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Tidskriftsartikel (refereegranskat)abstract
- Restrictions to activity and participation in persons with cerebral palsy or spina bifida are often due to both motor and executive dysfunction. Hence methods focusing solely on motor issues are not enough to enhance participation. The Cognitive Orientation to daily Occupational Performance ApproachTM is a performance-based approach offering clients opportunities to create their own strategies to learn skills. The aim of the present study was to explore and describe experiences of the Cognitive Orientation to daily Occupational Performance Approach as reported by young adults with cerebral palsy or spina bifida.Qualitative content analysis was used. Semi-structured individual interviews were conducted with the 10 participants aged 16-28, post-intervention and at 6-months follow-up.The participants described how the Cognitive Orientation to daily Occupational Performance Approach enhanced their self-efficacy. Four categories describing the participants' experiences emerged: "CO-OP is a different way of learning", "CO-OP sometimes puts a strain on me", "CO-OP supports my way of thinking and doing" and "CO-OP boosts me".The young adults expressed that the Cognitive Orientation to daily Occupational Performance intervention, although sometimes challenging, was worth the effort because it provided them with an opportunity to master everyday-life problems by using meta-cognitive thinking, which enhanced their self-efficacy. Implications for rehabilitation The Cognitive Orientation to daily Occupational Performance Approach™ - was perceived to provide opportunities to master everyday-life problems by using meta-cognitive thinking. The Cognitive Orientation to daily Occupational Performance Approach boosted the persons feeling of self-efficacy. The Cognitive Orientation to daily Occupational Performance Approach is person-centred and supports the person's own way of learning.
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| 24. |
- Amer, Ahmed, 1984-, et al.
(författare)
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Validity and test-retest reliability of Children's Hand-use Experience Questionnaire in children with unilateral cerebral palsy
- 2016
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Ingår i: Developmental Medicine & Child Neurology. - : Wiley-Blackwell. - 0012-1622 .- 1469-8749. ; 58:7, s. 743-749
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Tidskriftsartikel (refereegranskat)abstract
- Aim: To investigate the validity of the internet-based version of the Children's Hand-use Experience Questionnaire (CHEQ) by testing the new four-category rating scale, internal structure, and test-retest reliability.Method: Data were collected for 242 children with unilateral cerebral palsy (CP) (137 males and 105 females; mean age 9y 10mo, SD 3y 5mo, range 6-18y). Twenty children from the study sample (mean age 11y 8mo, SD 3y 10mo) participated in a retest within 7 to 14 days. Validity was tested by Rasch analysis based on a rating scale model and test-retest reliability by Kappa analysis and intraclass correlation coefficient (ICC).Results: The four-category rating scale was within recommended criteria for rating scale structure. One item was removed because of misfit. CHEQ showed good scale structure according to the criteria. The effective operational range was >90% for two of the CHEQ scales. Test-retest reliability for the three CHEQ scales was: grasp efficacy, ICC=0.91; time taken, ICC=0.88; and feeling bothered, ICC=0.91.Interpretation: The internet-based CHEQ with a four-category rating scale is valid and reliable for use in children with unilateral CP. Further studies are needed to investigate the validity of the internet-based version of CHEQ for children with upper limb reduction deficiency or obstetric brachial plexus palsy and the validity of the recommended improvements to the current version.
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| 25. |
- Ander, Ann, et al.
(författare)
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Äta och dricka , mer än att tugga och svälja
- 2000
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Bok (övrigt vetenskapligt/konstnärligt)abstract
- Boken beskrivar en av livets viktigaste aktiviteter -ATT KUNNA ÄTA OCH DRICKA. Boken vill inspirera alla som möter personer som har svårt att äta och dricka. Den vänder sig anhöriga, vårdpersonal, dietister och habiliterings-/rehabiliteringspersonal.
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| 26. |
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Arbetsterapi för barn och ungdom
- 2016. - 1
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Samlingsverk (redaktörskap) (övrigt vetenskapligt/konstnärligt)abstract
- I Arbetsterapi för barn och ungdom har 28 ledande experter inom arbetsterapi bidragit med gedigen kunskap och klinisk erfarenhet av barn och ungdom med funktionsnedsättningar.I boken finns ett tydligt fokus på aktiviteter i barnens vardag men även i förhållande till hälsa, samhälle och transition från barn till vuxenlivet. Arbetsterapi för barn och ungdom tar även upp aktiviteter kring lek, skola och fritid samt hur barn lär sig nya aktiviteter, och hur de kan träna och kompensera för nedsatt funktion. Kommunikation, kognitivt stöd och förmågan att använda sina händer behandlas också.
Boken representerar forskningsläget för svensk arbetsterapi inom området barn och ungdom. Den visar att det finns en bredd i den pågående forskningen men också att det behövs mer kunskap. Arbetsterapi för barn och ungdom riktar sig till arbetsterapeuter inom grundutbildning och fortbildning samt till verksamma arbetsterapeuter och andra yrkesgrupper som möter funktionsnedsatta barn och ungdomar.
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| 27. |
- Bergqvist, Lena, 1958, et al.
(författare)
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The 'process of doing' in everyday occupations - a challenge for young adults with cerebral palsy.
- 2024
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Ingår i: Scandinavian journal of occupational therapy. - 1651-2014. ; 31:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: There is a lack of knowledge about how persons with cerebral palsy (CP) perceive their 'process of doing' while performing everyday occupations. As described in the Model of the Process of Doing (MPoD), performing an occupation is a complex process consisting of six phases (generate idea, plan, initiate, enact, adjust, end) and time management.Aim: To collect the experiences of young adults with CP, classified at Manual Ability Classification System (MACS) level I or II, regarding how they perceive challenges in their occupational performance in relation to the different phases of the 'process of doing'.Method: Semi-structured interviews were performed with ten participants with CP aged 19-30years, MACS level I or II. The interview material was related to the MPoD phases using directed content analysis.Results: The participants' descriptions of how they perceived their personal 'process of doing' showed problems in all MPoD phases. All participants experienced difficulties in one or more phases, but none had difficulties in all phases. Difficulties were more frequent in some phases than in others.Conclusion/Significance: To understand the complexity of doing everyday occupations in young adults with CP, there is a need to address all phases of the 'process of doing'.
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| 28. |
- Holmqvist, Eva, et al.
(författare)
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Gaze-controlled communication technology for children with severe multiple disabilities: Parents and professionals' perception of gains, obstacles, and prerequisites.
- 2018
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Ingår i: Assistive technology : the official journal of RESNA. - : Informa UK Limited. - 1949-3614. ; 30:4, s. 201-208
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to explore parents' and professionals' thoughts of how a gaze-controlled computer can be beneficial to children with severe multiple disabilities. All systems were provided primarily for symbol-based communication, but were also used for other purposes such as play, leisure and school activities. A further aim was to investigate factors affecting usability, specifically for communication. The study used a qualitative approach, involving content analysis of semistructured interviews with the children's key persons (N = 11). The analysis yielded three categories and twelve subcategories. There were gains for the children in terms of empowerment, social interaction, learning opportunities and efficient computer use. Inaccessibility, liability issues and technical failure were seen as obstacles, while the prerequisites included time, collaboration, stimulating content, know-how and opportunities. To sum up, this study suggests that gaze-controlled technology can provide children who have multiple disabilities involving severe motor dysfunction and communicative and cognitive problems with new opportunities to communicate, interact and perform activities independently, as long as conditions are right.
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| 29. |
- Lidman, Git, et al.
(författare)
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Botulinum toxin A injections and occupational therapy in children with unilateral spastic cerebral palsy: a randomized controlled trial
- 2015
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Ingår i: Developmental Medicine and Child Neurology. - : Wiley. - 0012-1622. ; 57:8, s. 754-761
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Tidskriftsartikel (refereegranskat)abstract
- AimTo investigate the effects of repeated botulinum toxin A (BoNT-A) injections combined with occupational therapy, including a splint, compared with occupational therapy alone on hand function in children with unilateral spastic cerebral palsy (USCP), in all International Classification of Functioning, Disability and Health (ICF) domains. MethodThis was a randomized controlled study, population-based and evaluator-blinded for primary outcome (October 2004 to September 2010). Twenty children (14 males; median age 3y 1mo) with USCP, recruited at a rehabilitation centre in Sweden, were assigned to one of two parallel groups using concealed allocation. In the course of one year, 10 children received occupational therapy, while 10 received repeated BoNT-A plus occupational therapy (BoNT-A/OT). Primary outcome (Assisting Hand Assessment [AHA]), and secondary outcome measures (range of movement [ROM], and Canadian Occupational Performance Measure), were measured at baseline, 3, 6, 9, and 12months. ResultsAHA revealed a superior effect in the BoNT-A/OT group at 12months: 6 out of 10 improved compared with 1 out of 10 in the occupational therapy group (p<0.03). A 95% Peskun exact confidence interval for the difference in proportions is given as 0.01 to 0.81. Secondary outcomes improved in both groups. InterpretationRepeated BoNT-A/OT appeared superior to occupational therapy alone for bimanual performance in young children with USCP. Active ROM and goal performance improved in both groups.
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| 30. |
- Lidman, Git, et al.
(författare)
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How children with cerebral palsy master bimanual activities from a parental perspective.
- 2018
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Ingår i: Scandinavian journal of occupational therapy. - : Informa UK Limited. - 1651-2014 .- 1103-8128. ; 25:4, s. 252-259
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Tidskriftsartikel (refereegranskat)abstract
- During childhood, children learn the daily life activities they want and need to do. Children with unilateral spastic cerebral palsy often have difficulties performing activities requiring two hands.To describe parental reasoning on how children with unilateral spastic cerebral palsy learn to master the performance of bimanual activities in everyday life.Sixteen parents participated in focus groups, a qualitative research approach with its own methodological criteria and research methods.One overall theme emerged from the analysis: 'Finding harmony between pleasure and effort is the key to learning'. This overall theme arose as a synthesis of four themes: 'awakening of the inner drive', 'trying on one's own', 'enabling things to work' and 'it must be worth the effort´. The parents described when an activity woke their children´s inner drive to perform. Their children also strived to develop their own way to perform an activity, sometimes with the support of others, still, some activities were not possible to learn.Occupational therapists and others in the children's environment have an important mission to support the children to find their own harmony between pleasure and effort and their individual key to success in learning bimanual everyday activities.
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| 31. |
- Lidman, Git, et al.
(författare)
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Long-term effects of repeated botulinum neurotoxin A, bimanual training, and splinting in young children with cerebral palsy
- 2020
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Ingår i: Developmental Medicine and Child Neurology. - : Wiley. - 0012-1622 .- 1469-8749. ; 62:2, s. 252-258
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Tidskriftsartikel (refereegranskat)abstract
- Aim: To investigate long-term development of hand function after repeated botulinum neurotoxin A (BoNT-A) and occupational therapy at a young age. Method: Twenty children with unilateral spastic cerebral palsy (CP) (14 males, six females; median inclusion age 3y 1mo, range 1y 11mo–4y 3mo) participated in this longitudinal study. Ten children received occupational therapy after a randomized controlled trial and 10 repeated BoNT-A plus occupational therapy during 1-year. The Assisting Hand Assessment (AHA) and active supination, assessed the following 3years. The assessments were compared with data from a reference group to investigate development over time. Results: The improvement in AHA (7.5 AHA units) after BoNT-A plus occupational therapy was maintained at final follow-up. The occupational therapy group, unchanged after 1-year, improved by 5 AHA units (96% confidence interval [CI] 2–10), thus there was no difference between the groups. Median active supination increased in comparison with the reference group. In the BoNT-A/occupational therapy group, 9 out of 10 (97.85% CI 45 115) children improved in active supination. In the occupational therapy group, 7 out of 10 (97.85% CI –2 to68) children improved in active supination. No correlation between active supination and AHA was found. Interpretation: Bimanual performance achieved after BoNT-A plus occupational therapy was maintained, while it increased by follow-up in the occupational therapy group, suggesting that combined intervention gave earlier access to bimanual skills. Active supination was unrelated to AHA. © 2019 Mac Keith Press
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| 32. |
- Lidman, Git, et al.
(författare)
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Managing to learn bimanual activities - experiences from children and adolescents with cerebral palsy - a qualitative analysis
- 2022
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Ingår i: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 44:3, s. 395-403
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Tidskriftsartikel (refereegranskat)abstract
- Purpose:Children and adolescents with cerebral palsy often have impaired hand function. This makes it difficult for them to deal with everyday activities. The aim of the study was to explore the experiences of children and adolescents with unilateral spastic cerebral palsy when it comes to learning and dealing with activities requiring bimanual use. Method:Ten participants, attending mainstream schools, with unilateral spastic cerebral palsy (10-18 years, MACS-level I-III) took part in semi-structured interviews. Qualitative analysis with verbatim transcripts were analysed using a Grounded Theory approach. Results:The learning of bimanual activities was described as a process taking place in interaction with the dynamics of everyday situations. Five categories describing the participants experiences emerged: "Reaching a point where you want to learn", "Awareness and acceptance of your own abilities", "Dealing with the boundaries of the disability", "Dealing with the impact of people around you" and "Strategies for learning". A multi-dimensional theory was derived, summarising how the participants learned bimanual activities in daily life. Conclusions:Children and adolescents with unilateral spastic cerebral palsy express that the process of learning bimanual activities can only take place when it fits in with life as it unfolds. Thus, they have to adapt to a changing context and their own developing skills.
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| 33. |
- Lindquist, B., et al.
(författare)
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A scoping review of cognition in spina bifida and its consequences for activity and participation throughout life
- 2022
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Ingår i: Acta Paediatrica. - : Wiley. - 0803-5253 .- 1651-2227. ; 111:9, s. 1682-1694
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Tidskriftsartikel (refereegranskat)abstract
- Aim The aim of this scoping review was to summarise findings concerning cognitive characteristics in people with spina bifida and explain how cognitive factors influence activities and participation in different areas and stages of life. Methods PubMed, Psych INFO, ERIC, Scopus, CINAHL and the Cochrane Library were searched for English language papers published in 2000-2018. A total of 92 papers were selected and quality was assessed according to the McMaster criteria. The results were presented related to body functions, activity and participation from the International Classification of Function and Health, ICF. Results People with spina bifida tended to have a lower IQ than those without. The majority also had cognitive difficulties manifested in problems with language, perception, memory, executive and attentional functions. Those difficulties affected activity and participation in all life domains in ICF. This may affect medical adherence and responsibility and by extension the prevention of secondary complications. Conclusion It is important for caregivers, professionals and especially individuals with spina bifida themselves to understand and handle both physical and cognitive consequences in all life circumstances. Having insight into one's own assets and difficulties paves the way to managing life challenges, which could enhance health, self-management and participation in society.
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| 34. |
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| 35. |
- Ohrvall, A. M., et al.
(författare)
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Intervention with the CO-OP Approach leads to a transfer effect over time to untrained goals for children with cerebral palsy or spina bifida
- 2023
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Ingår i: Disability and Rehabilitation. - 0963-8288 .- 1464-5165.
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Tidskriftsartikel (refereegranskat)abstract
- PurposeThis study aims to investigate whether the treatment effects, in terms of goal attainment, transfer effects and impact on executive functions, of an intervention in children with cerebral palsy or spina bifida using the Cognitive Orientation to daily Occupational Performance (CO-OP) Approach are maintained over time, from immediately after the intervention to three months afterwards.MethodA three-month follow-up study, from an intervention using CO-OP. Thirty-four children (7-16 years) each identified four goals (one untrained to examine transfer) and participated in an eleven-session intervention. Assessments were performed at baseline, immediately after the intervention and at a three-month follow-up using the Canadian Occupational Performance Measure and the Performance Quality Rating Scale. Executive function and self-rated competence were assessed at the same timepoints.ResultsStatistically significant and clinically relevant improvements in goal achievement were demonstrated for both trained and untrained goals after the intervention and were maintained at follow-up. The clinically relevant improvement in untrained goals continued to increase until follow-up. Self-rated competence increased after the intervention and was maintained at follow-up.ConclusionThe CO-OP intervention was effective in achieving and maintaining the children's own goals over time. The transfer effect was confirmed by higher goal attainment for the untrained goals.
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| 36. |
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| 37. |
- Peny-Dahlstrand, Marie, 1953
(författare)
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Aktivitetens betydelse för barn och ungdom
- 2016
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Ingår i: Arbetsterapi för barn och ungdom. - Lund : Studentlitteratur AB. - 9789144092485 ; , s. 23-34
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Bokkapitel (övrigt vetenskapligt/konstnärligt)
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| 38. |
- Peny-Dahlstrand, Marie, 1953, et al.
(författare)
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Are there cross-cultural differences of ADL ability in children measured with the AMPS?
- 2012
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Ingår i: 9th COTEC congress of Occupational Therapy 24-27 May. Stockholm Sweden.
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Konferensbidrag (refereegranskat)abstract
- Introduction: Studies of self-care assessments for children have shown cultural differences in age-norms. No study has evaluated if there are cross-cultural differences in ADL motor and process skills in children measured with The Assessment of Motor and Process Skills (AMPS). Aim: To investigate if there were systematic differences in ADL ability measured with the AMPS between children from the Nordic countries and North America and to evaluate the applicability of the age norms for children from both regions. Method: Values from a total of 4613 typically developed children, 3-15 years old, were compared with ANOVA. Results: No differences of relevance between children from the two geographical regions were found, and the age-norm values were found to be applicable to both regions. Conclusion: The AMPS may be considered free from cultural bias and useful in clinical practice as well as in research both in a Nordic and a North American context.
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| 39. |
- Peny-Dahlstrand, Marie, 1953, et al.
(författare)
-
Are there cross-cultural differences of ADL ability in children measured with the Assessment of Motor and Process Skills (AMPS)?
- 2012
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Ingår i: Scandinavian Journal of Occupational Therapy. - : Informa UK Limited. - 1103-8128 .- 1651-2014. ; 19:1, s. 26-32
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Tidskriftsartikel (refereegranskat)abstract
- Abstract: Introduction: In many studies of self-care assessments for children, cultural differences in age-norm values have been shown. No study has evaluated whether there are cross-cultural differences in ADL motor and/or process skills in children when measured with the Assessment of Motor and Process Skills (AMPS). Aim: To investigate if there were systematic differences in ADL ability measured with the AMPS between children from the Nordic countries and North America and to evaluate the applicability of the existing international age-normative values for children from these two regions. Methods: Values from a total of 4 613 children, 3-15 years old, without known disabilities, from these geographical regions were compared with ANOVA. The difference in logits between each region and the mean values for each age group were calculated. Results: No differences of relevance in age-related ADL ability measures between children from the two geographical regions were found, and the age-norm values are applicable to both regions. Implications: The AMPS may be considered free from cultural bias and useful in both clinical practice and research concerned with children in both the Nordic countries and North America.
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| 40. |
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| 41. |
- Peny-Dahlstrand, Marie, 1953, et al.
(författare)
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Framtidens arbetsterapi
- 2016
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Ingår i: Arbetsterapi för barn och ungdom. Eliasson, Ann-Christin, Lidström, Helene & Peny-Dahlstrand, Marie (red.). - Lund : Studentlitteratur. - 9789144092485 ; , s. 333-336
-
Bokkapitel (övrigt vetenskapligt/konstnärligt)
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| 42. |
- Peny-Dahlstrand, Marie, 1953, et al.
(författare)
-
Is autonomy related to the quality of performance of everyday activities in children with spina bifida?
- 2012
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Ingår i: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 34:6, s. 514-21
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: To investigate the relationship between the level of autonomy and the quality of performance of everyday activities in a population-based cohort of children with spina bifida and to study the agreement between the children's and the parents' ratings of autonomy. Methods: 50 dyads of children (aged 6-14) with spina bifida and their parents rated the children's level of autonomy with an adapted, Swedish version of the Autonomy Scale from the Arc's Self-Determination Scale. Each child's quality of performance of everyday activities was assessed with the Assessment of Motor and Process Skills (AMPS). Results: The autonomy levels of the children with spina bifida were rated to be lowest in daily routines and highest in leisure activities. Binary logistic regression analyses revealed that age, motor skills and process skills were all significantly related to the autonomy level, but that process skills appeared to predominate in this respect. Concerning the perception of the autonomy level, little agreement was found between each child and his/her parent. Conclusions: It is important to understand and support the development of process skills as expressed in task performance in children with spina bifida and to pay attention to both the parent's and the child's opinion when setting goals and plans for interventions. [Box: see text].
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| 43. |
- Peny-Dahlstrand, Marie, 1953, et al.
(författare)
-
Is autonomy related to the quality of performance of everyday activities in children with spina bifida?
- 2012
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Ingår i: 9th COTC congress of Occupational Therapy 24-27 MAy , Stockholm Sweden.
-
Konferensbidrag (refereegranskat)abstract
- Aim: Investigate the relationship between the autonomy and the quality of performance of everyday activities in children with spina bifida. Methods: 50 dyads of children (aged 6-14) with spina bifida and their parents rated the children’s level of autonomy with a Swedish version of the Autonomy Scale. Each child’s quality of performance was assessed with the Assessment of Motor and Process Skills (AMPS). Results: The autonomy levels of the children with spina bifida were lowest in goal related activities. Logistic regression analyses revealed that age, motor skills and process skills were all significantly related to autonomy but that process skills appeared to predominate in this respect. Little agreement was found between each child’s and his/her parent’s ratings. Conclusions: It is important to understand and support the development of process skills in children with spina bifida and to pay attention to both the parent’s and the child’s opinion about autonomy.
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| 44. |
- Peny-Dahlstrand, Marie, 1953, et al.
(författare)
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Patterns of participation in school-related activities and settings in children with spina bifida
- 2013
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Ingår i: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 35:21, s. 1821-1827
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: To evaluate how children with spina bifida (SB) participate in school-related activities and to explore if their motor and process skills in task performance were related to their level of active participation in school. Method: Fifty children from a geographical cohort of children with SB (aged 6-14 years) and their teachers rated the children's frequency of participation in school-related activities using a Swedish adaptation of the Availability and Participation Scale. The teachers also rated each child's level of active participation with the School Function Assessment, part one. Each child's motor and process skills were evaluated with the Assessment of Motor and Process Skills. The relation between levels of active participation and motor and process skills was subjected to binary logistic regression analysis. Results: The children participated very frequently in school activities, but their level of active participation was restricted, particularly in the recess/playground setting. There was a highly significant relation between full active participation in most school settings and the children's motor and process skills. Conclusion: Children with SB need support to become more actively involved, particularly in unstructured peer activities. The school staff need to be informed that not only the motor skills but also the process skills have an impact on the children's active participation.
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| 45. |
- Peny-Dahlstrand, Marie, 1953, et al.
(författare)
-
Performance of activities in daily living in children born with spina bifida
- 2008
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Ingår i: Folke Bernadotte Stiftelsen konferens om delaktighet "En hel del" 18-19 september 2008.
-
Konferensbidrag (refereegranskat)abstract
- PERFORMANCE OF ACTIVITIES IN DAILY LIVING IN CHILDREN BORN WITH SPINA BIFIDA Background Dependency in daily living in children with spina bifida has most commonly been described as a problem due to motor dysfunctions and little is known about the impact on the performance of daily living activities due to executive dysfunction. The aim of this study was to evaluate the quality of the performance of daily activities in children with spina bifida. This study is the first in larger research plan aimed to study the correlation between skills of activity performance and perceived participation in school and everyday life among children born with spina bifida. Materials and Methods A cross-sectional study of children from the western region of Sweden with spina bifida (n=50) born between1993-1999, was carried out at the Regional Rehabilitation Centre for children and adolescents in Gothenburg to evaluate performance of activities in daily living using the Assessment of Motor and Process Skills (AMPS). The study group consisted of both children with and without hydrocephalus. The AMPS is an observational method designed to allow a simultaneous evaluation of the motor and process skills necessary for a competent performance. The results from the study group were analysed and compared to age-matched normative values and to match-pairs of typically developed Scandinavian children, in the latter case considering minimal clinical important differences (> 0,5 logits). Results The results showed that 60% of the children with spina bifida had lower ADL-motor skills and 48% had lower ADL-process skills than the age norms (± 2SD). Results from the match-pair comparisons shows that the study group had skill values that were lower and of clinical meaningful importance on motor skills in 80% of the cases and on process skills in 66% of the cases. There were significant differences in both motor skills and process skills in the study group between the children with and those without hydrocephalus with the former group demonstrating lower measures. Conclusions Children with spina bifida have, to a large extent, decreased ability to perform activities of daily living relating to impairment of both motor and process abilities. These findings suggests that to reach autonomy in daily life, children born with spina bifida need support from parents and professionals to find, to learn and to use strategies not only to know “how to do things” but also “how to get things done”
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| 46. |
- Peny-Dahlstrand, Marie, 1953, et al.
(författare)
-
Performance of everyday occupations in children with spina bifida assessed with Assessment of Motor and Process Skills; a population based study.
- 2010
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Ingår i: 15 congress of the World Federation of Occupational therapists.
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Konferensbidrag (refereegranskat)abstract
- Introduction: “I suppose he can do it, it’s somehow just never done.” This phrase is often heard within the clinic when parents whose children were born with spina bifida are asked how well their children perform everyday occupations. Resent research has shown the children with spina bifida often have deficits in cognitive and executive functions, but the consequents of those dysfunctions in everyday life has not been described. No prior study has, to the best of our knowledge, evaluated the difference in the quality of the performance of everyday occupation between children with spina bifida and typically developed children. Objectives: To evaluate the quality of the performance of everyday occupations in children with spina bifida. Methods: The study is population-based. Fifty children with spina bifida, of 65 children in a geographic cohort of western Sweden, aged 6 to14 years, were evaluated with Assessment of Motor and Process Skills (AMPS). Results: Most of the children with spina bifida had difficulties performing even well-known, self chosen everyday tasks in an effortless, efficient, and independent way, relating to deficits in both motor and process skills. Compared with age-normative values, 60 % of the children with spina bifida were found to have motor ability measures below 2SD and 48 % process ability measures below 2SD. The motor skills hardest to accomplish involved motor planning and the process skills hardest to accomplish were adaptation of performance and initiations of new steps, thus actually getting the task done. Conclusion: The results of this study imply that even if the child with spina bifida seems to know how to do things, he/she still might have problems getting them done, efficiently, on his/her own. To reach autonomy in life, children with spina bifida may need particular guidance to learn not only how to do things but also how to get things done. Contribution to the practice: Occupational therapy for children with spina bifida should focus on the occupational performance, and not just on each performance component.
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| 47. |
- Peny-Dahlstrand, Marie, 1953, et al.
(författare)
-
Processen i arbetsterapi för barn och ungdom
- 2016
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Ingår i: Arbetsterapi för barn och ungdom. Eliasson, Ann-Christin, Lidström, Helene & Peny-Dahlstrand, Marie (red.). - Lund : Studentlitteratur. - 9789144092485 ; , s. 119-128
-
Bokkapitel (övrigt vetenskapligt/konstnärligt)
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| 48. |
|
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| 49. |
- Peny-Dahlstrand, Marie, 1953, et al.
(författare)
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Quality of performance of everyday activities in children with spina bifida: a population-based study.
- 2009
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Ingår i: Acta paediatrica (Oslo, Norway : 1992). - : Wiley. - 1651-2227 .- 0803-5253. ; 98:10, s. 1674-1679
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Tidskriftsartikel (refereegranskat)abstract
- Aim: The aim of this study was to evaluate the quality of the performance of everyday activities in children with spina bifida. Methods: Fifty children with spina bifida (of 65 children in a geographic cohort), aged 6 to 14 years, were evaluated with Assessment of Motor and Process Skills. Results: Compared with age-normative values, 60% of the children with spina bifida were found to have motor ability measures below 2 SD and 48% process ability measures below 2 SD. Most of the children with spina bifida had difficulties performing well-known everyday activities in an effortless, efficient and independent way, relating to both motor and process skills. The motor skills hardest to accomplish involved motor planning and the process skills hardest to accomplish were adaptation of performance and initiations of new steps, thus actually getting the task done. Conclusion: To reach autonomy in life, children with spina bifida may need particular guidance to learn not only how to do things but also how to get things done.
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| 50. |
- Peny-Dahlstrand, Marie, 1953, et al.
(författare)
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Relationen mellan autonomi och aktivitetsutförande hos barn ryggmärgsbråck
- 2012
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Ingår i: Abstract bok för konferensen; HAB 2012, "Fånga framtiden- möjligheter för ökad aktivitet och delaktighet. Örebro 17-19 april 2012. ; :13:e forskningskonferensen
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Konferensbidrag (refereegranskat)abstract
- Relationen mellan autonomi och aktivitetsutförande hos barn ryggmärgsbråck Bakgrund Autonomi, dvs förmågan att vara sin egen aktör i livet, utvecklas gradvis under uppväxten och anses som en viktig personlig förutsättning för delaktighet. Autonomi beskrivs ha två komponenter, dels exekutiv/utförandemässig autonomi och dels beslutsfattande autonomi. Nyare studier har visat att individer som föds med ryggmärgsbråck förutom de tidigare kända motoriska och urologiska konsekvenserna, ofta också har en kognitiv profil där exekutiva svårigheter som att initiera och problemlösa är vanliga. Andra studier har visat att barn och ungdomar med ryggmärgsbråck inte utvecklar autonomi i takt med typiskt utvecklade jämnåriga och att de som vuxna har låg grad av delaktighet i samhällslivet. Få forskningsstudier har sökt samband mellan autonomi/delaktighet och förmågan att initiera och driva igenom aktiviteter hos barn med ryggmärgsbråck. Syfte Syftet var att undersöka graden av autonomi i vardagssituationer hos barn med ryggmärgsbråck och undersöka om det fanns en relation mellan barnets grad av autonomi och hans/hennes färdighet att utföra aktiviteter. Ett andra syfte var att undersöka samstämmigheten mellan barnens och föräldrarnas uppfattning om barnets autonomi. Metod Deltagare i studien var 50 av de 65 barn födda med ryggmärgsbråck 1993-1999 som bodde i Västra Götaland, Halland och Värmland 061231 och deras föräldrar. Autonominivån hos barnet skattades av barnet själv och dess förälder, var för sig, med en anpassad svensk version av ”Autonomiskalan”. Barnens färdighet att utföra aktiviteter bedömdes via observation med instrumentet ”Assessment of Motor and Process Skills” (AMPS) vilket ger två utförandefärdighetsvärden, ett för motorisk färdighet och ett för processfärdighet. Relationen mellan barnets färdighetsvärden och deras autonominivå analyserades med logistisk regression. Graden av samstämmighet mellan barnets och föräldrarnas skattning analyserades med tre olika analysmetoder. Resultat Studien visade att barnen med ryggmärgsbråck hade låg autonomi i vardagssituationer som var målinriktade och krävde egen initiering och att både motoriska och processfärdigheter hade relation till barnets autonominivå, men att processfärdigheterna (dvs. att initiera och driva en aktivitet från start till mål) hade den starkaste relationen. Samstämmigheten mellan det enskilda barnets och hans/hennes förälders skattning var genomgående låg och barnet skattade i vissa fall sin autonomi lägre vad föräldern gjorde. Slutsats: För att kunna ge rätt stöd för förbättrad autonomi och delaktighet är det av yttersta vikt att utvecklingen av utförandefärdigheter, framförallt processfärdigheter, hos barn med ryggmärgsbråck bedöms och beskrivs. Nedsatt förmåga att initiera och ”få något gjort” är sannolikt mer hämmande för barnet än vad de motoriska funktionsnedsättningarna är. Det faktum att barnet med ryggmärgsbråck ofta har en annan uppfattning än sin förälder om sin autonomi pekar på vikten av att uppmärksamma bådas uppfattningar vid habiliteringsplanering.
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