| 1. |
- 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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| 2. |
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| 3. |
- 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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| 4. |
- 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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| 5. |
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| 6. |
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| 7. |
- 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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| 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
- 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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| 9. |
- 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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| 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: 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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| 11. |
- 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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| 12. |
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| 13. |
- 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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| 14. |
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| 15. |
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| 16. |
- 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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| 17. |
- 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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| 18. |
- Öhrvall, Ann-Marie, et al.
(författare)
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Exploration of the Relationship Between the Manual Ability Classification System and Hand-Function Measures of Capacity and Performance
- 2013
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Ingår i: Disability and Rehabilitation. - : Informa Healthcare. - 0963-8288 .- 1464-5165. ; 35:11, s. 913-8
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: To further investigate the construct of Manual Ability Classification System (MACS) by evaluating the relationship between children's designated MACS levels and their outcomes on two different tests of hand function, measuring capacity and performance, respectively. Another aim was to use the International Classification of Functioning, Disability and Health-Child and Youth version (ICF-CY) as a framework to explore the uniqueness of the assessments.METHOD: Ninety-one children with cerebral palsy in MACS levels I-V, aged 5-17 years (mean 9.8, SD 3.0) participated. Data were collected using MACS, ABILHAND-Kids and Box and Block Test.RESULTS: A strong association between MACS and ABILHAND-Kids (rs = -0.88, p < 0.05) and MACS and Box and Block Test (rs = -0.81, p < 0.05) was demonstrated. Children's performance differed significantly between the different MACS levels (ABILHAND-Kids F (4:86) = 103.86, p < 0.001, Box and Block Test F (4:86) = 59.18, p < 0.001). The content comparison with ICF-CY, as a frame of reference, showed that these instruments capture fine hand use in the activity and participation component. The linking of the instruments to various ICF-CY categories demonstrated conceptual differences between the instruments. MACS had the broadest representation of ICF-CY domains.CONCLUSIONS: This study strengthens the construct, and thereby the validity, of MACS as a classification of children's hand function, expressed by the handling of objects in everyday activities in their daily environments.IMPLICATIONS FOR REHABILITATION: • This study has strengthened the evidence of Manual Ability Classification System (MACS) as being a valid and useful classification of children's hand function. • The various MACS levels describe different degrees of hand-function impairment. • MACS give a broad description of children's manual ability in a variety of daily life domains.
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| 19. |
- 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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| 20. |
- Öhrvall, Ann-Marie, et al.
(författare)
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The stability of the Manual Ability Classification System over time
- 2014
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Ingår i: Developmental Medicine & Child Neurology. - : Mac Keith Press. - 0012-1622 .- 1469-8749. ; 56:2, s. 185-189
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Tidskriftsartikel (refereegranskat)abstract
- AIM: To evaluate the stability over time of the Manual Ability Classification System (MACS) levels.METHOD: The study group comprised 1267 children with cerebral palsy (746 males, 521 females) who were followed from 2005 to 2010 with two or more registered MACS classifications rated at least 1 year apart. Thirty-five percent of the children (n=445) had four MACS registrations. The children were between 4 and 17 years old at their first rating, The stability over time was also compared between children who were younger (4y of age) or older (≥10y) at the time of their first classification.RESULTS: An excellent stability was found between two ratings at 1-year intervals with an intraclass correlation coefficient (ICC) of 0.97 (95% CI 0.97-0.97) and 82% agreement (n=1267). The stability was also excellent for two ratings performed 3 to 5 years apart (ICC 0.96; 95% CI 0.95-0.97) with an agreement of 78% (n=445). Across four ratings, 70% of the children remained at the same level. The results were similar for younger and older children, indicating that stability was not influenced by age.INTERPRETATION: This study provides evidence that MACS levels are stable over time and that the classification has predictive value.
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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. |
- Hellberg, Christel, et al.
(författare)
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Evidence and evidence gaps in assessments and interventions in areas related to social work research and practice – an overview of four evidence maps : [Vetenskapligt kunskapsläge om utredning och insatser i socialt arbete och forskning –en sammanställning av fyra kartläggningar]
- 2023
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Ingår i: European Journal of Social Work. - : Informa UK Limited. - 1369-1457 .- 1468-2664. ; 26:5, s. 882-895
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Tidskriftsartikel (refereegranskat)abstract
- This overview of four evidence maps is based on systematic reviews of assessment and interventions in social work practice. The aim was to investigate the evidence and evidence gaps within four important areas for social work research and practice. Descriptive data on search strategies and domains were collected from four evidence maps, on Social Assistance, Substance Dependence, Care for older adults respectively for persons with disabilities. The scientific quality and scientific evidence were assessed. Key findings were summarised by analyzing and discussing common and specific elements in the evidence maps. The overview was undertaken in close collaboration between researchers with expertise in the field and a government agency. The overview identified both evidence and evidence gaps with respect to effects and experiences of interventions and assessment methods in four evidence maps. Evidence maps provide a comprehensive picture of the state of social services research and can thereby be of use to both researchers and practitioners, and in the production of evidence based social work.
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| 25. |
- Hultman, Lill, et al.
(författare)
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Elusive Participation : Social Workers’ Experience of the Participation of Children with Disabilities in LSS Assessments
- 2019
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Ingår i: Scandinavian Journal of Disability Research. - : Stockholm University Press. - 1501-7419 .- 1745-3011. ; 21:1, s. 38-48
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to gain a deeper understanding of Swedish social workers’ experience of disabled children’s participation, to discover in what ways their knowledge about impairment and disability, combined with legal literacy and local context influence children’s participation in formal meetings and decision making. Seven focus-group interviews were conducted with 35 municipal social workers from communities in different parts of Sweden. The phenomenological analysis resulted in the overarching theme of elusive participation, in which participation was described as difficult to grasp both in relation to what was supposed to be achieved and what it was meant to result in. Elusive participation entailed a discrepancy between policy and practice, norms and perception of normality, conflicting perspectives and needs, judgment of children’s abilities. These findings underline the importance of creating safe spaces in which social workers have the opportunity for critical reflections and shared discussions about social work practice.
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| 26. |
- Modh, Christina, et al.
(författare)
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Assessing the Tool-Use Learning Process in Persons with Profound Intellectual and Multiple Disabilities
- 2023
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Ingår i: Disabilities. - 2673-7272. ; 3:4, s. 477-492
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Tidskriftsartikel (refereegranskat)abstract
- The aim of the study was to explore inter-rater reliability and rater experiences of applying the universal instrument Assessment of Learning Process (ALP) with persons with profound intellectual and multiple disabilities. The study used a mixed-methods design. Inter-rater reliability was tested by eight clinical raters who assessed 23 video clips of people learning to use a powered AKKA mobility platform with a line-follower system. The raters were four occupational therapists, two special education teachers, and two speech-language therapists. The qualitative Think-aloud method explored three of the raters experiences of applying the ALP instrument. The inter-rater reliability test of the universal ALP instrument showed a moderate linear weighted kappa value (0.45). All eight raters’ estimated the degree of difficulty or confidence for each assessment. Content analysis of Think-aloud data elucidated three of the raters experiences of observing performance characteristics and interpreting tool-use understanding. The reported inter-rater reliability of the universal ALP instrument can be considered acceptable for an observational study involving persons with profound intellectual and multiple disabilities. Thereby, the results suggest that the ALP can be applied to this population. This is important as assessing a person’s phase in the learning process guides the choice of ALP-facilitating strategies supporting progress in tool-use learning, which in turn may expand a person’s activity repertoire and participation.
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| 27. |
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| 28. |
- Öhrvall, Ann-Marie
(författare)
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Manual ability classification system (MACS) : development, evaluation and applicability
- 2011
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The ability to use our hands affects how we carry out almost all daily activities. Children with cerebral palsy (CP) have varying degrees of difficulties using their hands, ranging from minor clumsiness to major problems with any voluntary movements. There has not been any standardized, reliable method available for describing how children with CP use their hands. The aims of this thesis were to develop a system to classify hand function among children and adolescents with cerebral palsy, to evaluate the validity and reliability of the results, and to investigate whether the use of this classification system could increase knowledge about the ability of these children to use their hands, and how this correlates with self-sufficiency in daily activities. Study I describes the development of the Manual Ability Classification System (MACS). The central concept “manual ability,” is defined as the ability to handle objects in daily activities. The classification system consists of five levels. The MACS levels are based on the self-initiated ability of the children/adolescents to handle objects in their daily environment, i.e. when engaged in activities such as eating, dressing, playing, or doing schoolwork. The criteria for the different levels also include descriptions of the need for help or adaptations. The MACS is described in a brochure available on the Internet (www.macs.nu). The validity of the MACS content and concept have been evaluated using different methods and from various perspectives in each of the four studies in the thesis. This was accomplished by interviewing parents of children with CP, occupational therapists and physical therapists, and other experts in the field (Studies I and II). In addition, the correlation between MACS and other instruments of hand function was examined, using a questionnaire to measure the degree of difficulty children have using their hands in daily activities (ABILHAND-Kids), as well as a test of manual dexterity (Box and Block Test) (Study III). MACS was also compared with a classification of gross motor function (Gross Motor Function Classification System, GMFCS) (Studies I and IV). The outcome of MACS was then compared with a measure of independence of performance of daily activities (Pediatric Evaluation of Disability Inventory, PEDI) (Study IV). The reliability between different observers (two therapists, or one therapist and a parent, respectively) was reported in Study I. The overall results show that both parents and therapists found MACS to be a meaningful method of describing how children handle objects in daily life (Study I and II). The comparison between MACS and other instruments, ABILHAND-Kids and the Box and Block Test, showed a strong correlation (rs = -0.88, p < 0.05 and rs = -0.81, p < 0.05) among the different assessment methods, even though they describe different aspects of hand function. By linking the meaningful concepts of the instruments to categories of the International Classification of Functioning, Disability and Health (child and youth version) (ICF-CY), it was shown that the instruments cover various aspects of activity and participation within ICF-CY. MACS provided a significantly broader representation of activity and participation (linking to seven chapters) than the other two instruments (linking to two and one chapters, respectively) (Study III). A high correlation was also found between MACS and GMFCS (rs = 0.77, p < 0.05) (Study IV). Nevertheless, only half of the children were classified into analogous levels of MACS and GMFCS indicating the complementary nature of the instruments. Interrater reliability for MACS was studied in two ways: in part by having two therapists classify 168 children, and in part by having both parent and therapists classify 25 children. In both situations, interrater reliability was excellent (intraclass correlation coefficient 0.98 and 0.96, respectively) (Study I). Study IV investigated 195 children aged 3–15 years with different types of CP, using the PEDI functional skill scale for self-care and mobility. The results were compared to the children’s MACS and GMFCS levels. Stepwise multiple regression analysis verified that MACS was the strongest predictor of self-care (66%), while the GMFCS was the strongest predictor of mobility (76%). Moreover, children in MACS levels I and II demonstrated an age-related increase of skills, achieving complete or almost complete self-sufficiency in self-care, albeit at a later point than children without disabilities. Children with more severely affected hand function, MACS levels III–V, did not achieve self-sufficiency, and no age-related increase of self-care skills was observed. A similar picture was seen with regard to mobility based on GMFCS levels. In summary, the studies in this thesis show that MACS is a classification system that provides a valid and reliable functional description of manual ability in children and adolescents with CP.
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