| 1. |
- Alriksson-Schmidt, Ann I, et al.
(author)
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CP-North: living life in the Nordic countries? : A retrospective register research protocol on individuals with cerebral palsy and their parents living in Sweden, Norway, Denmark, Finland and Iceland
- 2019
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In: BMJ Open. - : BMJ. - 2044-6055. ; 9:10
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Journal article (peer-reviewed)abstract
- INTRODUCTION: Cerebral palsy (CP) is one of the most common neurodevelopmental disabilities. Yet, most individuals with CP are adults. How individuals with CP fare in terms of health, quality of life (QoL), education, employment and income is largely unknown. Further, little is known about the effects of having a child with CP on the parents. The Nordic countries are known for their strong welfare systems, yet it is unknown to what extent the added burden related to disability is actually compensated for. We will explore how living with CP affects health, QoL, healthcare utilisation, education, labour market outcomes, socioeconomic status and mortality throughout the lifespan of individuals with CP and their parents. We will also investigate if these effects differ between subgroups, within and across the Nordic countries. METHODS AND ANALYSES: CP-North is a multidisciplinary 4-year (1 August 2017 to 31 July 2021) register research project. The research consortium comprises researchers and users from Sweden, Norway, Denmark, Iceland and Finland. Data from CP registries and follow-up programmes, or cohorts of individuals with CP, will be merged with general national registries. All individual studies are structured under three themes: medical outcomes, social and public health outcomes, and health economics. Both case-control and cohort designs will be included depending on the particular research question. Data will be analysed in the individual countries and later merged across nations.ETHICS AND DISSEMINATION: The ethics approval processes in each individual country are followed. Findings will be published (open access) in international peer-reviewed journals in related fields. Updates on CP-North will be published online at http://rdi.arcada.fi/cpnorth/en/.
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| 2. |
- Alriksson-Schmidt, Ann I., et al.
(author)
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Flaunting our assets. Making the most of the Nordic registry goldmine : Cerebral palsy as an example
- 2020
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In: Scandinavian Journal of Public Health. - : SAGE Publications. - 1403-4948 .- 1651-1905. ; 48:1, s. 113-118
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Journal article (peer-reviewed)abstract
- Aims:To describe the early experiences of a Nordic multidisciplinary cerebral palsy (CP) registry research program combining data from national medical quality registries, follow-up programs and cohort data, in addition to data from other national registries; to explore the scientific and practical uses of such research, and provide recommendations for facilitating similar work in the future. Methods: The work was divided into three themes: medical outcomes, social and public health outcomes, and health economics; and three cross-cutting teams: a reference team, a challenge team, and a communication and dissemination team. Initially each country will perform domestic research, and in the second stage data will be merged across all Nordic countries. Data from national registries with vital statistics, education and work, social benefits, and healthcare will be used. Comparisons will be matched for both the individuals with CP and their parents. Results: Initial work has been done on agreeing which variables to request from the respective agencies and planning the correct procedures and steps required to acquire the data. As of 2018, Sweden, Norway, and Finland have received approved ethics board applications. Iceland and Denmark are waiting for their approvals. A webpage and a platform for internal communication have been created. Conclusions: Nordic register research has great potential. Linking national CP quality registries and follow-up programs with other large national registries holds particular promise because problems identified through research can be applied at a population level. It is imperative that ethical clearance and data delivery processes are streamlined and transparent, and that data variables are measured the same way in the different countries.
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| 3. |
- Alriksson-Schmidt, Ann I, et al.
(author)
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Living life with cerebral palsy? A description of the social safety nets for individuals with cerebral palsy in the Nordic countries
- 2021
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In: Scandinavian Journal of Public Health. - : SAGE Publications. - 1651-1905 .- 1403-4948. ; 49:6, s. 653-665
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Research review (peer-reviewed)abstract
- AIMS: This report reviews major laws, acts and regulations of social benefits and services for individuals with disabilities, focusing on cerebral palsy in the five Nordic countries. It summarizes the available benefits and services and the re-application process and provides comparative analyses among the countries.METHODS: Published reports, articles and relevant government and municipal websites were reviewed for each respective country and used to compile an overview and comparison between the countries.RESULTS: In the Nordic countries, there are a number of laws and regulations in place to support individuals with cerebral palsy and their families. In addition, there are numerous social benefits available for which individuals with disabilities can apply. Although there are national differences, the similarities across the five countries regarding laws, social benefits offered for individuals with cerebral palsy and the application processes are clear. However, the application processes seem cumbersome and, at times, redundant. Physicians and other healthcare specialists repeatedly need to write 'medical certificates' describing the diagnosis and its consequences for a disability that is chronic and lifelong.CONCLUSIONS: Participation in society for individuals with cerebral palsy disabilities can be enabled by social benefits. By extension, social benefits may indirectly have implications for public health in individuals with disabilities. Although the lives of individuals with cerebral palsy - as with others - can improve in certain areas, the need for social benefits will generally increase, not decrease, over time. Although it is clearly important to have checks and balances that prevent system misuse, it might be worthwhile from a cost-benefit perspective to investigate whether the current systems could be improved to better manage time and resources and avoid emotional distress by streamlining the application process.
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| 4. |
- Andersen, Randi Dovland, et al.
(author)
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Pain burden in children with cerebral palsy (CPPain) survey : Study protocol
- 2022
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In: Paediatric and Neonatal Pain. - : John Wiley & Sons. - 2379-5824 .- 2637-3807. ; 4:1, s. 11-21
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Journal article (peer-reviewed)abstract
- Pain is a significant health concern for children living with cerebral palsy (CP). There are no population-level or large-scale multi-national datasets using common measures characterizing pain experience and interference (ie, pain burden) and management practices for children with CP. The aim of the CPPain survey is to generate a comprehensive understanding of pain burden and current management of pain to change clinical practice in CP. The CPPain survey is a comprehensive cross-sectional study. Researchers plan to recruit approximately 1400 children with CP (primary participants) across several countries over 6-12 months using multimodal recruitment strategies. Data will be collected from parents or guardians of children with CP (0-17 years) and from children with CP (8-17 years) who are able to self-report. Siblings (12-17 years) will be invited to participate as controls. The CPPain survey consists of previously validated and study-specific questionnaires addressing demographic and diagnostic information, pain experience, pain management, pain interference, pain coping, activity and participation in everyday life, nutritional status, mental health, health-related quality of life, and the effect of the COVID-19 pandemic on pain and access to pain care. The survey will be distributed primarily online. Data will be analyzed using appropriate statistical methods for comparing groups. Stratification will be used to investigate subgroups, and analyses will be adjusted for appropriate sociodemographic variables. The Norwegian Regional Committee for Medical and Health Research Ethics and the Research Ethics Board at the University of Minnesota in USA have approved the study. Ethics approval in Canada, Sweden, and Finland is pending. In addition to dissemination through peer-reviewed journals and conferences, findings will be communicated through the CPPain Web site (www.sthf.no/cppain), Web sites directed toward users or clinicians, social media, special interest groups, stakeholder engagement activities, articles in user organization journals, and presentations in public media.
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| 5. |
- Dalen, Lars Kristian, et al.
(author)
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ActiveYou I - a new web-based measure of activity preferences among children with disabilities
- 2021
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In: Scandinavian Journal of Occupational Therapy. - : TAYLOR & FRANCIS LTD. - 1103-8128 .- 1651-2014. ; 28:8, s. 598-608
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Journal article (peer-reviewed)abstract
- Background Children's preferences for activities are one of the most important predictors for participation. Currently no web-based measure of activity preferences exists for children with disabilities. Aim To develop and investigate feasibility and internal consistency of a new web-based measure of activity preferences, ActiveYou I for children with disabilities. Materials and methods The ActiveYou I was developed in three steps using a mixed-methods design. A review of the preferred goal activities of 149 children with disabilities was used to identify relevant activities. A pilot version of ActiveYou I was tested with 341 children with disabilities. Semi-structured group interviews and cognitive interviews were conducted with therapists and children with disabilities. Results Nineteen physical activities were included in the pilot version. The pilot trial resulted in two activities being excluded, and one activity added, leaving the instrument with eighteen activities. Internal consistency was acceptable (Cronbach's alpha >= 0.77). Interviews with therapists and children showed that ActiveYou I included relevant activities and was easy to answer. Conclusion ActiveYou I proves to be a valid and feasible, web-based instrument for mapping activity preferences in children and adolescents with disabilities. Significance Preferences are an important mediator for participation; consequently it is essential to seek activities that match the children's preferences.
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| 6. |
- Hägglund, Gunnar, et al.
(author)
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Treatment of spasticity in children and adolescents with cerebral palsy in Northern Europe : a CP-North registry study
- 2021
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In: BMC Neurology. - : Springer Science and Business Media LLC. - 1471-2377. ; 21:1
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Journal article (peer-reviewed)abstract
- BACKGROUND: Spasticity is present in more than 80% of the population with cerebral palsy (CP). The aim of this study was to describe and compare the use of three spasticity reducing methods; Botulinum toxin-A therapy (BTX-A), Selective dorsal rhizotomy (SDR) and Intrathecal baclofen therapy (ITB) among children and adolescents with CP in six northern European countries.METHODS: This registry-based study included population-based data in children and adolescents with CP born 2002 to 2017 and recorded in the follow-up programs for CP in Sweden, Norway, Denmark, Iceland and Scotland, and a defined cohort in Finland.RESULTS: A total of 8,817 individuals were included. The proportion of individuals treated with SDR and ITB was significantly different between the countries. SDR treatment ranged from 0% ( Finland and Iceland) to 3.4% (Scotland) and ITB treatment from 2.2% (Sweden) to 3.7% (Denmark and Scotland). BTX-A treatment in the lower extremities reported 2017-2018 ranged from 8.6% in Denmark to 20% in Norway (p < 0.01). Mean age for undergoing SDR ranged from 4.5 years in Norway to 7.3 years in Denmark (p < 0.01). Mean age at ITB surgery ranged from 6.3 years in Norway to 10.1 years in Finland (p < 0.01). Mean age for BTX-A treatment ranged from 7.1 years in Denmark to 10.3 years in Iceland (p < 0.01). Treatment with SDR was most common in Gross Motor Function Classification System (GMFCS) level III, ITB in level V, and BTX-A in level I. The most common muscle treated with BTX-A was the calf muscle, with the highest proportion in GMFCS level I. BTX-A treatment of hamstring and hip muscles was most common in GMFCS levels IV-V in all countries.CONCLUSION: There were statistically significant differences between countries regarding the proportion of children and adolescents with CP treated with the three spasticity reducing methods, mean age for treatment and treatment related to GMFCS level. This is likely due to differences in the availability of these treatment methods and/or differences in preferences of treatment methods among professionals and possibly patients across countries.
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| 7. |
- Miklos, Mette, et al.
(author)
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How transactional relations contribute to adaptive developmental outcomes when young people with disabilities participate in specially designed group programs − a scoping review
- 2022
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In: Scandinavian Journal of Occupational Therapy. - : Informa UK Limited. - 1103-8128 .- 1651-2014. ; 29:8, s. 670-685
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Journal article (peer-reviewed)abstract
- Background: Meta-synthesis can enhance our existing knowledge regarding experiences of participation in group-based programs designed for young people with disabilities. Aim: This study aimed to identify the transactional relations between the social contexts in group programs and meaningful personal experiences and developmental processes for young people with disabilities. Method: For this research, 4 electronic data-bases were searched, 3406 citations were reviewed, and 13 qualitative studies describing experiences of participation in specially designed group-based programs from the perspective of young people with disabilities were included. A meta-ethnographic approach was used to synthesise the data, and resulting categories were conceptualised in King et al.'s framework of transactional processes and adaptive development. Results: Nineteen categories across six themes describing: environment, social context, social mechanisms, personal processes, meaningful experiences, and outcomes demonstrated the dynamic interrelation between social context and personal processes. Peer group interaction was essential for exploring capacities and developing strategies. Conclusion: This review highlights the important role of the peer group in transferring program experiences into the everyday life contexts of young people with disabilities. It may assist professionals who are considering the use of peer groups when planning participation-focussed programs aiming to facilitate personal development for young people with disabilities.
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| 8. |
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| 9. |
- Pettersson, Katina, et al.
(author)
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Psychometric evaluation of the Scandinavian version of the caregiver priorities and child health index of life with disabilities
- 2019
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In: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 41:2, s. 212-218
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Journal article (peer-reviewed)abstract
- Purpose: To examine test-retest reliability and construct validity of the Scandinavian version of the caregiver priorities and child health index of life with disabilities (CPCHILD) questionnaire for children with cerebral palsy (CP).Methods: Families were recruited in Sweden and Norway and stratified according to the gross motor function classification system levels I-V for children born 2000-2011, mean age 7.9 (SD 3.2). Construct validity based on the first questionnaire (n = 106) was evaluated for known groups, using linear regression analysis. Intraclass correlation coefficient was used to estimate test-retest reliability (n = 64), and Cronbach's alpha was calculated as an indicator of internal consistency.Results: The questionnaire showed construct validity and the ability to discriminate between levels of gross motor function for the total score and all domain scores (p < 0.05). Test-retest reliability was high with intraclass correlation coefficient of 0.92 for the total score and of 0.72-0.92 for the domain scores. Cronbach's alpha was 0.96 for the total score and 0.83-0.96 for the domain scores.Conclusions: The Scandinavian version of the CPCHILD for children with CP seems to be a valid and reliable proxy measure for health related quality of life.
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| 10. |
- Rinde, Elisabeth Rønning, et al.
(author)
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"I have to obey my pain" : children's experiences of pain burden in cerebral palsy
- 2024
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In: Disability and Rehabilitation. - : Taylor & Francis. - 0963-8288 .- 1464-5165. ; 46:6, s. 1112-1120
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Journal article (peer-reviewed)abstract
- PURPOSE: To explore pain experiences of children with cerebral palsy, and how it influences their everyday life.METHOD: Fourteen children with CP between eight and seventeen years old were included, using a purposeful sampling strategy. They had different experiences of pain, and different degrees of physical and cognitive impairments. Sixteen individual semi-structured interviews were carried out, and analyzed using inductive thematic analysis.RESULTS: Data analysis resulted in the main theme "I have to obey my pain" and four themes were identified. Experiences regarding pain varied ("My pain is mine alone"). Both pain itself and the use of cognitive strategies to cope with pain involved a mental struggle ("Pain brings me down"). The children had to make adjustments to manage their pain ("I want to participate, but I have to rest"). The most important help was to be understood, but adults also provided valuable help with interventions like stretching, medication and adjustment of activity levels ("Others can help me").CONCLUSION: Pain was a determining feature in the lives of these children with CP. The wide variety of experiences and challenges emphasized the need for tailored management strategies developed together with each child and their parents.IMPLICATIONS FOR REHABILITATIONChildren with cerebral palsy had varied experiences of pain, and health professionals need to tailor their pain management approaches to the individual child.Health services should offer pain education to expand children's repertoire of pain management strategies.When a child's pain influences their daily activities, health services must ensure that the school is informed of the child's situation, and able to make necessary adjustments.Health professionals should strive to include children's own descriptions whenever possible to make sure children feel heard and believed.Even children with communicative and cognitive impairments were able to self-report when necessary adjustments in the communication situation were made.
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| 11. |
- Rinde, Elisabeth Rønning, et al.
(author)
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"Pain is one piece of a complex jigsaw puzzle" : experiences of raising a child with cerebral palsy who has pain
- 2023
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In: Disability and Rehabilitation. - : Taylor & Francis. - 0963-8288 .- 1464-5165.
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Journal article (peer-reviewed)abstract
- Purpose: To explore experiences of parenting a child with CP and pain.Method: Fourteen mothers and one father of children (9-16) with CP were included. All children had pain regularly, but the frequency and intensity of their pain experiences varied. Their motor function varied from GMFCS level I to V. Cognitive abilities varied from normal to moderate cognitive deficits. All children could express themselves verbally. Semi structured individual interviews were carried out, and results were developed using inductive thematic analysis.Results: The analysis resulted in the main theme "My child's pain is just one piece of a complex jigsaw puzzle". The main theme was developed by four mutually exclusive, but related themes: "My child's struggle burdens me", "Pain and CP direct our everyday life", "I want to be in control, but cannot always be" and "We are the only ones who understand the complexity".Conclusion: Parents of children with CP experience pain as one aspect of a bigger picture. They need help and support to cope with their child's pain, and professional helpers need to address the complexity pain is a part of.IMPLICATIONS FOR REHABILITATION: Parents of children with cerebral palsy (CP) experience their child's pain as one piece in a jigsaw puzzle, and counseling needs to address the complexity rather than the separate parts of the picture.Health professionals should support parents in evaluation and management of their child's pain, as a feeling of competence in pain management is important to reduce parental stress.Health professionals should inform themselves about the life situation of parents whose child with CP has pain, and encourage them to seek practical support and apply for relevant support schemes that can make their everyday life easier.Parents of children with CP should be encouraged to take part in a diagnosis-specific support group, where they can meet with others in a similar situation, in order to reduce their feeling of being alone with their challenges.
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| 12. |
- Steinhardt, Friedolin, et al.
(author)
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Exploring two subdimensions of participation, involvement and engagement : A scoping review
- 2022
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In: Scandinavian Journal of Occupational Therapy. - : Taylor & Francis. - 1103-8128 .- 1651-2014. ; 29:6, s. 441-463
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Journal article (peer-reviewed)abstract
- Background The conceptualisation of participation is an ongoing discussion with importance for measurement purposes. The aim of this study was to explore the two subjective subdimensions of participation, involvement and engagement. The purpose was related to measure development within the field of paediatric rehabilitation. Methods In a scoping review, following the PRISMA-ScR, the databases MEDLINE, PubMed, Academic Research Complete, PsychINFO, and Business Source Complete were searched for publications that described engagement and/or involvement constructs. Results Thirty-nine publications met the inclusion criteria. Involvement could be conceptualised as an unobservable state of motivation, arousal, or interest towards a specific activity or product. Building a consensus over different fields of research, engagement can be seen as the individual's behavioural, cognitive and affective investment during role performance. Conclusions This scoping review points in a direction that the two subdimensions of participation need to be separated, with involvement being a more stable internal state of interest towards an activity, and engagement referring to the specific behaviour, emotions, and thoughts meanwhile participating in a specific setting. Clear definition of concepts will enhance the development of measures to evaluate rehabilitation interventions in the field of occupational therapy and related fields.
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| 13. |
- Steinhardt, Friedolin, et al.
(author)
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Perceived facilitators and barriers for participation in leisure activities in children with disabilities : perspectives of children, parents and professionals
- 2021
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In: Scandinavian Journal of Occupational Therapy. - : TAYLOR & FRANCIS LTD. - 1103-8128 .- 1651-2014. ; 28:2, s. 121-135
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Journal article (peer-reviewed)abstract
- Background: There is limited knowledge about facilitators and barriers to leisure activity participation for children with disabilities in Norway, which is needed to improve rehabilitation interventions. Aim: This study aims to explore the main facilitators and barriers for participation in leisure activities for children and youth with disabilities in Norway. Methods: Semi-structured group interviews with 31 parents, 20 healthcare professionals, and nine children with disabilities were conducted. Qualitative content analysis with thematic coding was used, and the model of factors affecting the participation of children with disabilities developed by King et al. was applied for further deductive analysis. Results: Child factors, as viewed by parents and professionals, worked primarily as barriers and tended to increase with the child's age. The children themselves focussed on their own preferences, friendship and enjoyment as their main facilitators for participation. Most environmental and family factors worked both as facilitators and as barriers, with parental support as the most important facilitator. Differences between urban and rural areas in the availability and accessibility of activities were reported.
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| 14. |
- Ullenhag, Anna, et al.
(author)
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How did youth with cerebral palsy perceive participation in everyday life after participating in a periodical intensive rehabilitation program based on adapted physical activity in groups? : A qualitative interview study
- 2024
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In: Disability and Rehabilitation. - : Taylor and Francis Ltd.. - 0963-8288 .- 1464-5165.
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Journal article (peer-reviewed)abstract
- Purpose: Explore how youths with CP experience participation in everyday life, their experience of having participated in a periodical intensive rehabilitation programme and their expectations for the future. Materials & methods: A qualitative design that included semi-structured interviews with 14 youths with CP (mean age 17 years). Results: The qualitative content analysis exposed six themes, (1) Everyday life–to get the pieces of your life to fit together, (2) Participation means inclusion and belonging–the meaning of life, (3) Individual and environmental factors influencing participation, (4) Experience of physical and social activities away from home together with like-minded people, (5) To be continued locally, and (6) You do not know the future, anything can happen–visions for the future. Conclusions: Participation in everyday life increases the meaning of life but takes energy. Periodical intensive rehabilitation programme enabled youths to try new activities, make friends and increase self-insight in their own strengths and limitations.IMPLICATIONS FOR REHABILITATION Young people with cerebral palsy (CP) describe participation as the meaning of life and state that it is essential for inclusion and being able to contribute to society Adaptation of environmental factors including collaboration across service sectors and capacity building in young people within their preferred life situations appear to be essential A periodical intensive rehabilitation, including adapted physical activities in groups, is recommended to provide peer learning and mastery experiences in young people with CP. Young people with CP seem to have the same hopes for the future as their typically developing peers.
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| 15. |
- Willis, Claire, et al.
(author)
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Enabling physical activity participation for children and youth with disabilities following a goal-directed, family-centred intervention
- 2018
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In: Research in Developmental Disabilities. - : PERGAMON-ELSEVIER SCIENCE LTD. - 0891-4222 .- 1873-3379. ; 77, s. 30-39
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Journal article (peer-reviewed)abstract
- Background There is a paucity of research demonstrating the optimisation and maintenance of participation outcomes following physical activity interventions for children and youth with disabilities. Aim: To evaluate changes in physical activity participation in children with disabilities following a goal-directed, family-centred intervention at a healthsports centre, and to identify factors influencing participation following the intervention. Methods and procedures: A mixed methods pre-test post-test cohort design was applied. Recruitment occurred over a 12 month period during standard clinical service provision. The Canadian Occupational Performance Measure (COPM) was administered to children and parents pre (T1) and post-intervention (T2), and at 12 weeks follow-up (T3). Goal Attainment Scaling (GAS) was applied to assess outcomes at 12 weeks follow-up (T2 T3). Qualitative inquiry described barriers to goal attainment at T3. Outcomes and results: Ninety two children with a range of disabilities (mean age 11.1yr; 49 males) were included in the study. Statistically significant and clinically meaningful improvements in parent ratings of COPM performance and satisfaction of participation goals were observed following intervention. Ratings at 12 weeks follow-up remained significantly higher than baseline, and 32% of children attained their COPM-derived GAS goal. Environmental factors were the most frequent barrier to goal attainment following intervention. Conclusion and implications: These results provide preliminary evidence for goal-directed, family centred interventions to optimise physical activity participation outcomes for children with disabilities.
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