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A Swedish cultural adaptation of the participation questionnaire Functional Scale of the Disability Evaluation System – Child version

AXELSSON, Anna Karin
ULLENHAG, Anna
ÖDMAN, Pia
2021

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Purpose: The aim was to culturally validate a questionnaire about children’s/youth’s participation to be used in a Swedish context.


Methods: FUNDES-Child, based on the well-established CASP, was chosen. Questions about engagement and hindering factors were added to the existing questions about frequency and independence in 20 activity areas. Using a qualitative, explorative design, 16 interviews with children/youths/caregivers were made to explore opinions about the questionnaire. Follow-up interviews confirmed the result of the revised questionnaire. Qualitative content analysis was performed.

 

Results: The interviews provided support for the questionnaire’s relevance by being a tool to assess important aspects of participation, to gain insights into one’s own/the child’s participation, and to promote ideas about what causes the degree of participation. To achieve comprehensiveness, no activity area was found to be missing nor superfluous. However, some examples were needed to be modified where “parades” are unusual in Sweden and therefore removed, while “singing in choir” was added. In search for comprehensibility, opinions about the layout of the first version were raised and a varying degree of understanding of wording and concepts were found and thus taken into account. 

 

Conclusions: The questionnaire can be used for establishing meaningful goals and to potentially increase children’s participation.

When differences are made into likenesses: the normative documentation and assessment culture of the preschool

KARLSUDD, Peter
2021

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This article is based on studies carried out within the Young children’s learning research education programme. This undertaking involved five graduate students, all recruited from the Swedish preschool system. The licentiate thesis makes up the final product of their education programme, and the focus of each candidate’s licentiate thesis was preschool-level documentation. Using the results of all five theses, a re-analysis was conducted with the concept of normality as the common starting point. The purpose was to investigate whether documentation and assessment can change the view of normality in preschools, and furthermore, what consequences there may be for preschool activity. ‘The narrow preschool and the wide preschool’ is the model used to support the analysis, which is a model used in previous studies to review and discuss educational choices and conditions in the school system. Results of the present investigation show that the documents and assessments performed in preschool have a strong focus on the individual child and a traditional, school-oriented learning is highly valued. The documentation and assessment practices that take place now in our preschools, therefore, most likely influence the preschool view of normality and restrict the acceptance of differences.

Patients’ and communication partners’ experiences of communicative changes in Parkinson’s disease

JOHANSSON, Inga-Lena
SAMUELSSON, Christina
MULLER, Nicole
February 2021

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Purpose: The aim of the present study was to investigate the experiences of people with Parkinson’s disease and their close communication partners regarding disease-related communicative changes and participation in everyday conversations.

 

Materials and methods: Semi-structured qualitative interviews were conducted with six dyads consisting of a person with Parkinson’s disease and a close communication partner. The interview material was analysed through thematic analysis.

 

Results: The main theme was the experiences of barriers and facilitators for participation in conversations. Subthemes were experiences related to changes in voice and articulation, language and cognition, body language and facial expressions, fatigue, self-image, communicative initiative, and familiarity with conversation partner. The results show individual variation. A change observed in almost all dyads was the person with Parkinson’s disease participating less in conversations.

 

Conclusions: Assessment and interventions should be based on a broad perspective on communication, and individuals’ priorities should be foregrounded in intervention planning. Both the person with Parkinson’s disease and communication partners need to make adjustments for communication to work. Therefore, close communication partners should be included in assessment and intervention of communication in Parkinson’s disease from an early stage.

Validation of the international classification of functioning, disability and health (ICF) core sets from 2001 to 2019 – a scoping review

KARLSSON, Elin
GUSTAFSSON, Johanna
February 2021

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Objective: To investigate and summarize the literature on the validation of International classification of functioning, disability and health (ICF) core sets from 2001 to 2019 and explore what research methods have been used when validating ICF core sets.

 

Methods: The current study is a scoping review using a structured literature search.

 

Results: In total, 66 scientific articles were included, of which 23 ICF core sets were validated. Most validation studies were conducted in Europe using a quantitative methodology and were validated from the perspective of patients. Analysis methods differed considerably between the studies, and most ICF core sets were validated only once for a single target population or from a single perspective. The comprehensive core sets were validated more often than the brief core sets, and core sets for stroke and low back pain were validated most often.

 

Conclusion: The results of the current study show that only 66% of the existing ICF core sets are validated. Many of the validation studies are conducted in a European context and from a single perspective. More validation studies of ICF core sets from the perspective of both patients and professionals are needed.

Social media and disability advocacy organizations: caught between hopes and realities

GELFGREN, Stefan
INELAND, Jens
COCQ, Coppélie
2021

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This article examines the role of advocacy organizations and their use of social media within the field of disability in Sweden. How do the organizations negotiate digital media, and what are the (intentional or unintentional) consequences related to the use of social media? With focus on the representatives of advocacy organizations, we study how they reflect and act in order to balance various motives, and what challenges and ambiguities that arise. On one hand, there is a perceived need to be online and communicate with members and the surrounding society. On the other hand, digital communication induces a divide between those who have the resources to take part in such communication, and those who do not – in terms of digital competence, economy, age, cognitive abilities, technical equipment and digital connection. The heterogeneity of resources and target groups inevitably challenges both the ideals of inclusion and intentions of advocacy organizations.

Coordination of return-to-work for employees on sick leave due to common mental disorders: facilitators and barriers

HOLMLUND, Lisa
HELLMAN, Therese
ENGBLOM, Monika
KWAK, Lydia
SANDMAN, Lars
TöRMKVIST, Lena
BRäMBERG, Elizabeth Björk
December 2020

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Purpose: To identify facilitators of and barriers to the coordination of return-to-work between the primary care services, the employee, and the employers from the perspective of coordinators and employees on sick leave due to common mental disorders (CMDs).Material and methods:

 

Descriptive qualitative study. Semi-structured interviews were conducted with eighteen coordinators and nine employees on sick leave due to CMDs. The Consolidated Framework for implementation Research (CFIR) was used as a starting point for the interview guides and in the thematic analysis of data.

 

Results: The results show facilitators and barriers related to the CFIR domains“intervention characteristics,” outer setting,” inner setting,” and“characteristics of individuals.”Positive attitudes, an open dialogue in a three-party meeting, and a common ground for the sick leave process at the primary care centre facilitated coordination, while an unclear packaging, conflicts at the employee’s workplace, and a lack of team-based work were examples of barriers.

 

Conclusion: The results indicate a need for the detailed packaging of coordination; formalization of coordinators’ qualifications and levels of training; and acknowledgment of the role of organizational factors in the implementation of coordination. This is important to further develop and evaluate the efficacy of coordination.

Moral distress and ethical decision-making of eldercare professionals involved in digital service transformation

FRENNERT, Susanne
2020

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Aim

Technology affects almost all aspects of modern eldercare. Ensuring ethical decision-making is essential as eldercare becomes more digital; each decision affects a patient’s life, self-esteem, health and wellness.

 

Methods

We conducted a survey and interviews with eldercare professionals to better understand the behavioural ethics and decision making involved in the digital transition of eldercare.

 

Conclusion

Our qualitative analysis showed three recurrent roles among eldercare professionals in regard to digital service transformation; makers, implementers and maintainers. All three encountered challenging and stressful ethical dilemmas due to uncertainty and a lack of control. The matter of power relations, the attempts to standardize digital solutions and the conflict between cost efficiency and if digital care solutions add value for patients, all caused moral dilemmas for eldercare professionals. The findings suggest a need for organizational infrastructure that promotes ethical conduct and behaviour, ethics training and access to related resources.

Postural asymmetries, pain, and ability to change position of children with cerebral palsy in sitting and supine: a cross-sectional study

CASEY, Jackie
ROSENBLAD, Andreas
RODBY-BOUSQUET, Elisabet
2020

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Purpose: To examine any associations between postural asymmetries, postural ability, and pain for chil- dren with cerebral palsy in sitting and supine positions.

 

Methods: A cross-sectional study of 2,735 children with cerebral palsy, 0-18years old, reported into the Swedish CPUP registry. Postural asymmetries, postural ability, the gross motor function classification sys- tem levels I–V, sex, age and report of pain were used to determine any relationship between these variables.

 

Results: Over half the children had postural asymmetries in sitting (n1⁄41,646; 60.2%) or supine (n1⁄41,467; 53.6%). These increased with age and as motor function decreased. Children were twice as likely to have pain if they had an asymmetric posture (OR 2.1–2.7), regardless of age, sex and motor func- tion. Children unable to maintain or change position independently were at higher risk for postural asym- metries in both supine (OR 2.6–7.8) and sitting positions (OR 1.5–4.2).

 

Conclusions: An association was found between having an asymmetric posture and ability to change position in sitting and/or lying; and with pain. The results indicate the need to assess posture and provide interventions to address asymmetric posture and pain.

Do both ‘get it right’? Inclusion of newly arrived migrant students in Swedish primary schools

TAJIC, Denis
BUNAR, Nihad
2020

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The aim of this article is to advance knowledge on how Swedish primary schools organise education and what strategies they deploy to ensure inclusion and attainment of newly arrived migrant students. The article is based on semi-structured interviews with 30 teachers and school administrators, and one-year of fieldwork undertaken in two multicultural urban primary schools in the Stockholm region. One of the schools initially places students in separate classes, while the other one places them directly into mainstream classes. Both are evoking inclusion and attainment as a reason for using their respective models. As such, do both ‘get it right’? Using inclusion as the theoretical and conceptual framework this article addresses the broader question: How is the meaning of inclusion constructed in the processes of its practical implementation in these two schools? The results show the ambitious tale of inclusion in both schools was, in the process of the construction of its meaning and implementation, reduced to some of its aspects. Teachers and school administrators are allowed to include or leave out of their model whatever they deem necessary, obsolete, expensive or unrealistic and still fitting under the umbrella of inclusion. Sometimes it works, sometimes it does not, and both schools ‘get it right’ and ‘wrong’ in some aspects.

Work conditions, support, and changing personal priorities are perceived important for return to work and for stay at work after stroke – a qualitative study

LINDGREN, Ingrid
Brogårdh, Christine
PESSAH-RASMUSSEN, Helene
JONASSON, Stina B
GARD, Gunvor
2020

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Purpose: To explore work related and personal facilitators and barriers for return to work (RTW) and stay at work after stroke.

 

Materials and methods: Twenty individuals post-stroke (median age 52 years; seven women) were inter- viewed in focus groups. Data were analyzed by using qualitative content analysis.

 

Results: An overall theme “Work conditions, support and changed personal priorities influenced RTW and stay at work after stroke” emerged and covered three categories: “Adjustments and flexibility at the work place facilitated RTW and a sustainable work situation”, “Psychosocial support and knowledge about stroke consequences facilitated work and reduced stress”, and “Changed view of work and other personal priorities”. Physical adjustments at the work place and flexibility in the work schedule were perceived facilitators. Support from family and colleagues were important, whereas lack of knowledge of stroke dis- abilities at the work place was perceived a barrier. Also changed personal priorities in relation to the work and the current life situation influenced RTW in various ways.

 

Conclusions: The individual’s opportunities to influence the work situation is a key factor for RTW and the ability to stay at work after stroke. Adjustments, flexibility, support, knowledge of stroke, and receptiv- ity to a changed view of work are important for a sustainable work situation.

Does the purpose matter? A comparison of everyday information and communication technologies between eHealth use and general use as perceived by older adults with cognitive impairment

JAKOBSSON, Elin
NYGÅRD, Louise
KOTTORP, Anders
OLSSON, Cecilia Bråkenhielm
MALINOWSKY, Camilla
2020

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Background and objective

Everyday information and communication technologies (EICTs) are increasingly being used in our society, for both general and health-related purposes. This study aims to compare how older adults with cognitive impairment perceive relevance and level of EICT challenge between eHealth use and general use.

 

Methods

This cross-sectional study includes 32 participants (65–85 years of age) with cognitive impairment of different origins (due to e.g., stroke or dementia). The Short Everyday Technology Use Questionnaire+ (S-ETUQ+) was used, providing information about the relevance of EICTs and measuring the EICT level of challenge. Data were analysed with descriptive statistics, standardized z-tests and Fisher’s exact tests. The significance level was set to p < .05.

 

Results

The result shows that the perceived amount of relevant EICTs for eHealth use was lower in all 16 EICTs compared to those of general use. About the perceived level of challenge, a significant difference was detected in one of the seven included EICTs between eHealth use and general use.

 

Conclusions

In this sample, all EICTs were perceived as having lower relevance for eHealth use compared to general use, suggesting that the purpose of using an EICT affects the perceived relevance of it. Also, once an EICT is perceived as relevant and used for eHealth purposes, there seem to be little to no differences in perceived challenge compared to the same EICT used for general purposes.

The value of powered mobility scooters from the perspective of elderly spouses of the users – a qualitative study

FREDRIKSSON, Carin
PETTERSSON, Ingvor
HAGBERG, Lars
HERMANSSON, Liselotte
2020

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Purpose

To explore spouses’ experiences of the value of mobility scooters prescribed to their partner.

 

Material and Methods

A descriptive design with a qualitative approach was used. Thirteen spouses (11 females) aged 65–86 years participated. Semi-structured interviews were conducted when the spouse’s partner had had the mobility scooter for 4–6 months. The interviews were analysed using qualitative content analysis.

 

Results

The interviews showed primarily that the spouses experienced that their everyday lives and life situation had improved since their partner had received a mobility scooter. They reported that they could engage in activities of their own choice to a greater extent. The prescription of a mobility scooter to their partner had also yielded a sense of freedom related to shared activities. On the other hand, the spouses described some of the scooter’s limitations. Three categories emerged: a sense of freedom related to the spouse’s own activities, a sense of freedom related to shared activities and a somewhat restricted freedom.

 

Conclusion

Prescription of a powered mobility scooter was of value to the users’ spouses because it facilitated independent and shared activities and participation in the community. The value was mainly expressed as a sense of freedom when doing things on their own or together with their partner. Spouses are key persons in the rehabilitation of people with mobility restrictions. Their views on the assistive device may influence the rehabilitation process. Knowledge of spouses’ experiences is thus crucial, as this may influence the future rehabilitation outcome.

A person living with dementia learning to navigate an iPad: a case study

INGEBRAND, Elias
SAMUELSSON, Christina
HYDÉN, Lars-Christer
2020

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Purpose

This study challenges the notion that people living with dementia are unable to achieve novel learning without focussed intervention techniques. The purpose of this study is to explore how a woman living with dementia (Alzheimer’s disease) learns to use a tablet computer with support from communicative partners.

 

Method

The study is based on video recordings and the theoretical framework of learning as changing participation in joint activities. Quantitative and qualitative focus is on changes in the interactional organization over the course of six weeks in the activity of using an augmentative and alternative communication application.

 

Results

Over time, the participant living with dementia, relies less on the expertise and explicit instructions of her communicative partners when navigating the application, and more on the immediate feedback provided by the tablet computer.

 

Conclusions

The findings suggest that novel learning still is possible for people living with dementia, even without the implementation of focussed interventions. This study further emphasizes the procedural nature of learning for people living with dementia as the woman’s embodied actions were carried out in an increasingly more direct fashion.

Work capacity assessments and efforts to achieve a job match for claimants in a social security setting: an international inventory

SENGERS, Johan H
AMBA, Femke I
BROUWER, Sandra
STAHL, Christian
2020

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Purpose: Many high-income countries are witnessing a shift of focus on eligibility for disability benefits towards promotion of work reintegration. However, little is known about how countries assess work cap- acity, and how a job match is then obtained. The current study aims to compare work capacity assess- ments and available efforts to achieve a job match in eight high-income OECD countries.

 

Methods: A survey was conducted among key stakeholders concerning organization of work capacity assessments in social security settings, and efforts made to obtain a job, across eight OECD countries: Australia, Denmark, Finland, Iceland, Sweden, the Netherlands, the United Kingdom and the United States. 

 

Results: In most countries, work capacity is assessed at several time points, with variations in moments and in information used for job matching. In countries obtaining information on personal and work levels, the search to find a job match usually begins with the persons who have disabilities.

 

Conclusion: Although a shift towards a holistic focus in work capacity assessment has been recognized, medical factors still prevail. Limited emphasis is placed on the implications of functional limitations for the possibilities of work. A holistic approach to assessment needs to be coupled with holistic support measures through provision of coordinated and high quality job matching services.

Segregated education as a challenge to inclusive processes: a total population study of Swedish teachers’ views on education for pupils with intellectual disability

GÖRANSSON, Kerstin
BENGTSSON, Karin
HANSSON, Susanne
KLANG, Nina
LINDQVIST, Gunilla
NILHOLM, Claes
2020

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Many pupils with disabilities receive schooling in segregated contexts, such as special classes or special schools. Furthermore, the percentage of pupils educated in segregated settings has increased in many European countries. Studies suggest that there is high commitment to the general ideology of inclusive education among teachers in ‘regular’ education in many countries. This survey study investigates the views of teachers in segregated types of school about education. A questionnaire was sent out, in 2016, to all Swedish teachers (N = 2871, response rate 57.7%) working full time in special classes for pupils with intellectual disability (ID). On a general level results show that there is a strong commitment to preserving a segregated school setting for pupils with ID, a limited desire to cooperate with colleagues from ‘regular schools’ and a view that schooling and teaching are not quite compatible with the idea of inclusive education. The results highlight the importance of investigating processes of resistance within segregated schools to the development of inclusive schools and education systems. We argue that, while research and debate about inclusive education are important, both are insufficient without analyses of existing types of segregated schooling.

Significant challenges when introducing care robots in Swedish elder care

JOHANSSON-PAJALA, Rose-Marie
GUSTAFSSON, Christine
2020

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Introduction: 

Care robots are machines, operating partly or completely autonomously, that are intended to assist older people and their caregivers. Care robots are seen as one part of the solution to the aging population, allowing fewer professional caregivers to provide the necessary assistance and care. Despite the potential benefits, the dissemination of care robots, and welfare technology in general, is limited in Swedish elder care.

 

Purpose: 

To explore the challenges of introducing welfare technology, particularly care robots, in elder care.

 

Materials and methods:

 Twenty-one individual interviews with key actors at the societal level, analysed by thematic analysis.

 

Results: 

The challenges, from the societal actors’ perspectives, were related to; the beliefs in technology, attitudes, ethics, collaboration, and the need for knowledge and skills regarding care robots (individual and group challenges). Challenges of a national character were: national governance, infrastructure, laws and regulations, economics, and procurement (systemic and societal challenges). In addition, the necessary preconditions for successful introduction were revealed as: the utility of the technology, implementation, evaluation and safety, security, and integrity (preconditional challenges).

 

Conclusions: 

The introduction of care robots in elder care services seems to be more challenging than that of welfare technology in general, given the context and prevailing attitudes and preconceptions about robotics. Significant challenges need to be managed, at all levels of the society, before care robots can become an integral part of daily care and assist older people and their caregivers in activities and rehabilitation.

Family experiences up to seven years after a severe traumatic brain injury–family interviews

STENBERG, Maud
STALNACKE, Britt-Marie
SAVEMAN, Britt-Inger
June 2020

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Purpose: To explore the experiences of being a family with one member suffering from severe traumatic brain injury (STBI) up to 7 years earlier through narrative family interviews.

 

Methods: There are few studies where a family as a unit, including persons with STBI, are interviewed together. This study used a family systems research approach following a qualitative interpretative design. Therefore, 21 families with a total of 47 family members were interviewed. Qualitative content analysis was used to reveal categories with sub-categories and a theme.

 

Results: “From surviving STBI towards stability, through the unknown, into a new everyday life and a new future as a family” characterized the implicit message. The results revealed two categories both with three subcategories. The first category characterized the rapid change from a normal everyday life to one of uncertainty and finally to one of stability, and the second category described how it is to adapt as a family after STBI.

 

Conclusions: Long-term experiences of STBI show the importance for the whole family of belonging to a context, having a job, and having something to belong to as a way to achieve stability. Families` feelings of loneliness and lack of treatment and support are challenges for professionals when trying to involve families in care and rehabilitation.

Factors of importance for return to work, experienced by patients with chronic pain that have completed a multimodal rehabilitation program – a focus group study

SVANHOLM, Frida
LIEDBERG, Gunilla Margareta
LÖFGREN, Monika
BJÖRK, Mathilda
2020

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BACKGROUND AND PURPOSE: To reduce the individual, societal, and economic burden of the high sick leave rates due to chronic pain, it is essential to find effective strategies for increasing return to work (RTW). Although multimodal rehabilitation programs (MMRPs) may have positive effects on RTW, the results are inconsistent. This study explores the factors that contribute to decreasing sick leave and increasing RTW in patients with chronic pain who completed a MMRP.

 

METHOD: Four focus groups and three individual interviews were conducted. In total, 18 patients were interviewed. All patients had chronic pain and had completed a MMRP. They were either employed or unemployed, either working to some degree or fully on sick leave. The data were analysed using qualitative content analysis.

 

RESULTS: Three main categories were identified: Knowledge and understanding–prerequisites for tailored solutions; Individual adaptations–necessary but difficult to implement; and Stakeholder collaboration–needs improvement.

 

CONCLUSION: The participants described a variety of facilitating and limiting factors that created complex prerequisites for RTW. This finding makes it clear that these patients need tailored interventions and strong collaboration among all stakeholders throughout the rehabilitation process. Tailored interventions and collaborations could improve the effectiveness of MMRPs.

A preschool for all children? – Swedish preschool teachers’ perspective on inclusion

HAU, Hanna Ginner
SELENIUS, Heidi
ÅKESSON, Eva Björck
2020

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Building on the Salamanca Statement from 1994, the United Nations Sustainability Development Goals 2030 embraces inclusion for children in early childhood education. The European Agency for Special Needs and Inclusive Education in 2015–2017 completed a project on inclusive early childhood education, focusing on structures, processes, and outcomes that ensure a systemic approach to high-quality Inclusive Early Childhood Education (IECE). An ecosystem model of IECE was developed with a self-reflection tool for improving inclusion. This study’s aim was to investigate practitioners’ perspective on the inclusive processes and supportive structures defined in the ecosystem model, to contribute to a deeper understanding of how inclusive practice might be enabled and how barriers for inclusion can be removed. The self-reflection tool was administered in a heterogeneous municipality in Sweden, where inclusive settings are standard. Documentation from approximately 70 teachers on 27 teams was received. The documentation was analysed with qualitative content analysis based on the ecosystem model. The results showed a strong emphasis on group-related processes, whereas data on individual-related processes were scarce. This one-sided focus on the group level might endanger the inclusive processes and outcomes concerning the individual child.

Managing to learn bimanual activities – experiences from children and adolescents with cerebral palsy – a qualitative analysis

LIDMAN, Git
HIMMELMAN, Kate
PENY-DAHLSTRAND, Marie
May 2020

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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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