BACKGROUND: Disabilities can hinder children's and youths' participation (frequency of attendance and engagement) and independence in everyday life.

AIMS: To identify factors that predict levels of participation and independence in everyday activities in Swedish children and youths with disabilities.

MATERIAL AND METHODS: This cross-sectional study, including 131 participants, utilised instruments about child and environmental factors. LASSO regression analyses were conducted to identify predictors of participation and independence.

RESULTS: An item screening for comprehension difficulties was the strongest predictor of attendance, engagement, and independence in daily activities. Other influential child factors included the presence of seizures, speech abilities, age, pain levels, and motor functions. None of the studied environmental factors were retained as predictors in the models.

CONCLUSIONS: Difficulties in intellectual functioning need to be evaluated and considered in planning interventions to improve participation and independence. Likewise, multifaceted nature of challenges found in this study underscores the need for diversity of interventions tailored for individual needs.

SIGNIFICANCE: The result underscores the critical role of comprehension and intellectual functioning in predicting and enhancing participation and independence in children and youths with disabilities, advocating for comprehensive assessments and sustained support.

Background: FUNDES-Child-SE is a proxy rating questionnaire for measuring participation and independence in children with disabilities in a Swedish context. It includes the components of frequency of attendance, engagement and independence. The original, Taiwanese FUNDES-Child 7.0, has previously been found to have a four-factor structure for frequency of participation and a two-factor structure for independence. The aim of this study was to test the factor structure in FUNDES-Child-SE. The factor structure is an important part of construct validity.

Methods: Caregivers of 163 children with disabilities aged 6–18 years participated in this cross-sectional study. Exploratory factor analysis was used to find the factor structure for Engagement. Confirmatory factor analysis was used to test the factor structure for all three components.

Results: The proposed factor structure for frequency of participation (daily living participation frequency, mobility participation frequency, learning participation frequency and community participation frequency) and independence (daily living independence and social participation independence) fit with data from FUNDES-Child-SE after excluding three to five items and adding two to five covariances of residuals. In the engagement component, two factors, named engagement in informal activities and engagement in formal activities, were found. After excluding one item and adding 10 covariances of residuals, the factor structure had an acceptable fit to data.

Conclusions: Differences in components' factor structure indicate that attendance and engagement are separate aspects of participation. Before using numeric scores from FUNDES-Child-SE in clinical settings, responsiveness and interpretability should be evaluated.

In the study of communication, meaning-making may be explained as a process consisting of collaborative and distributed actions between participants in interaction. This view is of special importance in communication with individuals living with deafblindness. Staff working in group housing for people with congenital deafblindness can be considered as communication partners. Using a qualitative and explorative design, 18 communication partners have been individually interviewed concerning their perceptions of strategies to facilitate social interaction with adults with congenital deafblindness. The interviews were transcribed and analysed using content analysis. The analyses generated three categories of perceived strategies 1) having essential competence and qualities, 2) getting to know and understand each other, 3) use of facilitating techniques. The results indicate that staff continuity in homes for people with deafblindness is key for the well-being of the people cared for. Combinations of perceived experiences from interviews, and forthcoming video-ethnographic observations, may form the basis of training programs.

Background: There is a need for an instrument to measure participation and independence in children with disabilities. FUNDES-Child-SE has its origin in the participation questionnaire Child and Adolescent Scale of Participation.

Aims: Test the psychometric properties of internal consistency and test-retest reliability.

Material and methods: This cross-sectional study included caregivers of 163 children with disability aged 6–18 years, 59 of whom were also included in the test-retest study. Descriptive statistics were used to evaluate the proportions of valid ratings. Internal consistency and test-retest reliability were tested through Cronbach’s alpha and the intra-class correlation coefficient.

Results: The amount of not relevant/not applicable ratings was substantial but varied between items and subdomains. Internal consistency was acceptable (0.8–0.95), and the test-retest was marginal to excellent (0.73–0.95).

Conclusions: The reliability together with the content validity support the use of the FUNDES-Child-SE to measure participation and independence in children with disabilities. However, results should be interpreted with caution due to the small sample size and possible selection bias. Modifications to reduce the not relevant/not applicable responses should be investigated together with the instrument’s responsiveness.

Significance: FUNDES-Child-SE can be used to facilitate a discussion of participation and independence and to plan interventions in a habilitation setting.

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.

Implications for rehabilitation

• Participation is of great importance for children's functioning, well-being, and development.
• Cultural validation of well-established participation questionnaires is a priority and questions about important aspects of participation need to be included.
• Interviews with children/youth and caregivers guided revisions to reach relevance, comprehensiveness, and comprehensibility of the Swedish FUNDES-Child (FUNDES II-SE).
• Children/youths, caregivers, and others may increase their awareness concerning the child's/youth's participation by responding to the questionnaire.

Background and aims: Social interactions in preschool and a child's gender are, in cross-sectional studies, related to the child's overall levels of hyperactive behaviour and engagement in preschool activities. However, whether social interaction and gender can predict children's engagement and hyperactivity is not thoroughly investigated. This study aims to investigate the longitudinal influence of gender, child-to-child interaction, and teacher responsiveness on the association between trajectories of children's levels of core engagement and hyperactive behaviour. It was hypothesized that peer-to-child interaction and teacher responsiveness in preschool settings are related to positive change in engagement among children with hyperactive behaviour, especially for boys.

Sample and methods: Swedish preschool staff completed questionnaires assessing the variables of interest for children aged 1–5 (N = 203). Data were collected on three occasions over a two-year period. Latent growth curve (LGC) models were used to explore whether teacher responsiveness, peer-to-child interaction, and gender predict trajectories of engagement and hyperactivity.

Results: The results revealed that high levels of hyperactivity were associated with lower levels of engagement on the first occasion. Positive peer-to-child interactions and responsive teachers were significant predictors of an increased level of engagement and decreased level of hyperactive behaviour, especially for boys.

Conclusions: The findings underscore the need to improve social interactions, especially peer-to-child interactions, to improve engagement in children with hyperactive behaviour, especially boys. Implications for practices and research are discussed. 

Rationale: Patients in secure forensic psychiatric care have reduced autonomy because of the constraints imposed on them by compulsion laws. Thus, it is vital that nurses enable patient participation whenever possible. Patient participation, and it′s clinical use in forensic psychiatric care, is an understudied field.

Aim: To describe nurses’ experiences of their work with patient participation in forensic psychiatric care. Methods: Managers at different secure forensic psychiatric institutions in the south of Sweden approved the study, and oral consent was retrieved from informants. Interviews guided by a semi-structured interview guide were conducted with nine nurses from five different forensic psychiatric institutions and analysed with content analysis.

Findings: Nurses describe diverse understandings and abilities in an inflexible setting. This indicates that what participation is, and how to achieve it, is not the same for nurses as for patients. Moreover, patients have different abilities to participate, and the secure setting in itself is perceived as hindering participatory work. Still, participation is described as a crucial part of work that requires a caring relationship. Furthermore, nurses pronounce potentially excluding attitudes and strategies that may obstruct patient participation for all, and at the same time, they have a belief that improvement is possible.

Conclusion: Compulsory forensic psychiatric care is a complex care context that requires constant efforts from nurses to balance patients’ rights and needs with mandatory care. The very nature of this caring context appears to be a major obstacle when promoting patient participation. Nevertheless, nurses express that they do aim for patient participation, ‘they try’. From a patient's perspective, trying is not sufficient and a need for improvement is evident. The results can be of clinical interest in similar secure forensic psychiatric nursing settings, and a point of departure in future development of care striving for increased patient participation for all.

Det här kapitlet är skrivet utifrån den forskning som vi har genomfört närdet gäller barn med omfattande funktionsnedsättningar. Forskningen handlarom hur barnens delaktighet i familjens vardag kan underlättas genom personligassistans. För att förstå vikten av barns delaktighet och varför personlig assistanskan underlätta barnets delaktighet, liksom familjens vardag, inleds kapitletmed att beskriva innebörden och vikten av delaktighet. Det beskrivs också vaddet medför att ha en omfattande funktionsnedsättning. Därefter följer en kortredogörelse av vad barnkonventionen och konventionen för personer med funktionsnedsättningar säger i ämnet, vilka aktiviteter som en vardag kan innehållasamt vad som gör dessa så viktiga. Likaså skildrar kapitlet hur delaktigheten iaktiviteterna kan underlättas. I ljuset av allt detta beskrivs slutligen den personliga assistentens mycket viktiga men samtidigt svåra roll. 

The Swedish personal assistance system, facilitated through Swedish legislation (known as the LSS), allows children with profound intellectual and multiple disabilities (PIMD) to receive subsidized personal assistance. This assistance may be either a hired professional from outside the family or a parent paid as a personal assistant. The type of personal assistant can impact activity selection. As noted by bio-ecological systems theory, participation in “systems” beyond the household is important for a child’s cognitive and social development, including the development of children with disabilities. The authors explored whether children’s personal assistant type (i.e., external or parental) is related to their presence in socially integrative activities (SIAs) versus non-socially integrative activities (NSIAs). The relationship between children’s activity engagement and their personal assistant type was examined via a descriptive, comparative study based on a questionnaire. Sixty families answered, providing quantitative data about personal assistance type across 56 common family activities. Children’s external assistants showed a greater presence in SIAs than children’s parental assistants, who showed a greater presence in NSIAs. The level of activity engagement between personal assistant type, however, had a less direct relationship. In accordance with bio-ecological systems theory, activity selection can influence the child’s cognitive and social development. Ultimately, this study suggests that external assistants partake in more SIAs than parental assistants, likely as a function of providing respite for families. This respite stems from the LSS’s implicit role for external personal assistants to also serve as relief for parents. In turn, by facilitating exposure to broader systems, these external assistants can play a critical role in children’s social and cognitive development.

Background Children with profound intellectual and multiple disabilities need support to function in an optimal way. However, there is a limited knowledge about the role of external personal assistants working in the children's home. Materials and Methods A mixed method study was performed including qualitative data from interviews with 11 Swedish parents and nine external personal assistants and quantitative data from questionnaires answered by 60 families. Results For the child, the assistant's role was one of reinforcing, meaning supportive and empowering, and the child needed a high level of assistance. For the family, the role was one of balancing and the external personal assistant was more often found to assist in activities away from home while parents tended to assist within home and in family unit activities. Conclusion In planning and implementation of external assistance, the child's needs as well as considerations of the whole family should be regarded.