Parenting children with disabilities in Sweden: a cluster-analysis of parenting stress and sufficiency of informal and formal support.

Objective: To investigate patterns of parenting stress and access to sufficient informal and formal support among parents of children with disabilities. To explore whether child cognitive level, conduct problems and the need of language interpretation in contacts between parents and professionals are associated with patterns of parenting stress and support. Method: Parents (N = 140) of children with disabilities in Sweden completed a questionnaire about parenting stress and support. Patterns of three variables-parenting stress and access to sufficient informal and formal support-were investigated using cluster analysis. The relationship of child cognitive level, level of conduct problems and of language interpretation needs between parents and professionals to cluster membership was explored using multinomial logistic regression. Results: Five different clusters of parenting stress and support emerged. Parents in cluster 1 had lower than sample mean ratings on all three variables. Cluster 2 had elevated parenting stress, cluster 3 had elevated insufficient informal support and cluster 4 had elevated insufficient formal support. Cluster 5 had elevated ratings on all three variables. Greater child cognitive difficulties increased the likelihood of parent membership in cluster 2 (elevated stress), cluster 3 (elevated insufficient informal support), or cluster 5 (elevated ratings on all variables). Child conduct problems increased the likelihood of membership in cluster 2 (elevated stress) or cluster 5 (elevated ratings on all variables). No relationship between language interpretation needs and cluster membership was found. Conclusions: Patterns of parenting stress and sufficiency of support, and their associations with child characteristics, vary substantially. However, families of children with conduct problems experiencing elevated parenting stress in combination with insufficient informal and formal support, may be particularly vulnerable. The results of the current study highlight the clinical importance of exploring and identifying individual parenting stressors and perceived levels of support, to be able to adapt services to better suit a variety of needs, and thus promote equitable care.

Construct validity of the simplified Chinese version of the instrument 'Picture My Participation'.

BACKGROUND: Preliminary evidence of the content validity of the simplified Chinese version of 'Picture My Participation' (PMP-C; Simplified) items and reliability of the subscale attendance for the effectiveness of the use with children and youth in mainland China has been collected. However, evidence of construct validity for the instrument is not yet available. AIM: To explore the construct validity of the attendance scale in PMP-C (Simplified). METHODS: A cross-sectional study using convenience sampling was conducted using PMP-C (Simplified) with a picture-supported interview for 290 children and youths aged 5-21 with and without ID in urban and rural areas of mainland China. Exploratory factor analysis (EFA) was performed using the principal component analysis (PCA) to analyse the resulting data. RESULTS: The EFA extracted five factors with eigenvalues greater than one and the cumulative contribution rate of factors accounted for 51.62% of the variance. All items had factor loadings above 0.50. The five subcomponents included: organised activities, social activities, taking care of others, family life activities and personal care and development activities. CONCLUSION: The results of the factor analysis support the construct validity of the PMP-C (Simplified) attendance scale. It provides further psychometric evidence that PMP-C (Simplified) is a sound measure to assess participation for children and youths in mainland China.

How can we reach long-lasting inclusive participation for all? A vision for the future.

In 2022, an international conference was held focusing on 'participation'. We shared current evidence, identified knowledge gaps and worked together to understand what new knowledge and community and practice changes were needed. This brief communication is a summary of the conference delegates' discussions. We present the key assumptions we make about participation and propose what is needed to create change for societies, communities, families and individuals. While we have some robust evidence to support participation approaches, more is needed, and it is everyone's responsibility to build an inclusive society where participation for all is the reality.

Strategies Used by Professionals in Pediatric Rehabilitation to Engage the Child in the Intervention Process: A Scoping Review.

AIM: To investigate strategies used by professionals in pediatric rehabilitation to engage children in every step of the intervention process, including assessment, goal setting, planning and implementation of the intervention, and results evaluation. METHODS: A scoping literature review was conducted, and seven databases were searched, including CINAHL and MEDLINE, ProQuest Central, PsycINFO, Social Science Premium Collection, PubMed, and Web of Science. A citation search of included articles was completed. Predetermined criteria, quality standards, and PIO framework guided the selection process. Results were presented in relation to Self-Determination Theory (SDT) and the contextual model of therapeutic change. RESULTS: In total, 20 studies were included in the review. Pediatric professionals reported that therapeutic use of self and their own engagement in the intervention facilitated the establishment of a supportive relationship. Providing clear explanations about their role and therapy rationale developed positive expectations. By making the child feel successful within-session and outside-session activities, professionals enhanced child mastery. Professionals' strategies were abstractly described. CONCLUSIONS: Further research is needed to investigate strategies that are effective in the different steps of the intervention. More observational, longitudinal studies are required to capture fluctuations in in-session engagement.

Feasibility of an eye-gaze technology intervention for students with severe motor and communication difficulties in Taiwan.

Eye-gaze technology provides access to a computer through the control of eye movements, thus allowing students with severe motor and communication difficulties to communicate and participate in curriculum activities and leisure; however, few studies have investigated whether any challenges exist to its implementation. This study examines the feasibility for teachers, parents, and therapists of applying an eye-gaze technology intervention for students with severe motor and communication difficulties in everyday settings. A mixed-method design was applied, focusing on the acceptability, demands, implementation, and practicality of the technology applications. Data was collected from 16 participants who assisted five students using eye-gaze technology in a previous 6-month intervention. The intervention comprised (a) use of eye-gaze devices with individualized content; and (b) services including training in use, team meetings, and bi-monthly support on implementation problems. The results showed that the participants perceived the technology as appropriate to enhance interaction and understanding of the students' learning and communication messages. Portable and easy-to-adjust systems were crucial to apply eye-gaze technology in different contexts. Improving eye-gaze services was required to afford in-service education, follow-up services, and loaning programs for sustainable implementation. The facilitators and barriers could guide researchers and practitioners to enhance the implementation of eye-gaze technology.

The application of the family of participation-related constructs (fPRC) framework to AAC intervention outcomes in children with complex communication needs: a scoping review.

Participation is a fundamental human right, and being able to communicate is an essential component of participation in various life situations, such as at school, with peers, and in the community. Augmentative and alternative communication (AAC) interventions aim to facilitate communication and social interaction, independence, and participation in all aspects of life. The purpose of this study was to summarize and map the AAC intervention outcomes for children with complex communication needs onto the Family of Participation-Related Constructs (fPRC) framework. The scoping review identified 270 studies for inclusion, and the data gathered was extracted and mapped onto the fPRC framework. The results indicate that although many studies have reported on participation-related constructs such as activity competence and context, there is still insufficient focus on attendance and involvement, sense of self, and environment constructs. Hence, future research in the field of AAC is needed on the various constructs of participation proposed by the fPRC framework.

Patterns of smartphone usage associated with depressive symptoms in nursing students.

Introduction: Rather than focusing on the activities that the smartphone has been used for, the existing literature frequently focuses on the association between problematic use of smartphone independent of the content of use (self-reported) and depressive symptoms in youth. This study aims to explore patterns of smartphone usage and the association with depressive symptoms in nursing students. Methods: This cross-sectional study of nursing freshmen (n = 1, 716) was conducted between October and November 2018. Participants were recruited from three Chinese public medical universities using stratified cluster sampling. Self-rated frequency of 12 different smartphone activities over the preceding week was evaluated. Depressive symptoms were assessed by using the Patient Health Questionnaire-9 (PHQ-9). Results: Of the 1,716 students recruited, 1,424 (83.0%) were girls, and the mean [SD] age was 18.90 [1.39] years. Using principal component analysis (PCA), two typical usage patterns were indicated. The "entertainment pattern" factor included a high frequency of streaming images or videos, searching for information, chatting online, online shopping, downloading, reading online, checking social media sites, taking pictures or videos, and playing games. The "communication pattern" had a high frequency of emailing, texting, and calling. Using logistic regression models, the association between smartphone usage patterns and depressive symptoms was tested. The "communication pattern" was significantly associated with a 53% increase in the odds of moderate and above depressive symptoms (AOR = 1.529; 95% CI = 1.286-1.818; p < 0.001), controlling for a set of socio-demographic and smartphone use covariates. Discussion: This study provides insights into how the patterns of smartphone usage are associated with the severity of depressive symptoms in nursing students. It indicates that it may primarily be how we use our smartphones rather than how much we use them that poses a risk for depression.

Patterns of mental health problems and well-being in children with disabilities in Sweden: A cross-sectional survey and cluster analysis.

BACKGROUND: Children with disabilities have an increased risk of mental health problems. Patterns of mental health problems and well-being may vary. AIMS: To identify patterns of mental health problems and well-being in children with disabilities in Sweden, and investigate the influence of parental background (migration, education), and child cognitive level. METHOD: In this cross-sectional study, cluster analysis was used to analyse parents' ratings of conduct problems, emotional symptoms, and prosocial behaviour on the Strengths and Difficulties Questionnaire (SDQ) in children with disabilities (n = 136). The influence of parental background (migration, education) and child cognitive level on cluster membership was explored through multinomial logistic regression. RESULTS: Five clusters of mental health patterns emerged. Three clusters had mean ratings near or past clinical cut-off for one each of the SDQ-subscales. One cluster had difficulties on all three subscales. Greater child cognitive difficulties increased the likelihood of low prosocial behaviour (OR 2.501, p < .001) and of difficulties on all three subscales (OR 2.155, p = .006). Parental background did not influence cluster membership. CONCLUSION: Children with disabilities display varying mental health patterns. Awareness of the complexity of mental health patterns among children with disabilities is important. Screening and support for emotional symptoms and prosocial behaviour deficits should be considered for children with conduct problems.

Agreement between children with long-term health conditions and their primary caregivers on reports of perceived participation.

Background: There is limited knowledge regarding the perceived participation of children with long-term health conditions in everyday activities. Children may have perceptions that differ from those of their primary caregivers. It is unclear whether children and caregivers rate their participation in everyday situations in the same way. Objectives: We aimed to explore the level of agreement pertaining to perceived participation (attendance and involvement) and examine whether differences exist in the rank order of activities selected as the three most important between reports from children with long-term health conditions and their primary caregivers. Methods: The simplified Chinese version of the Picture My Participation (PMP-C; Simplified) was used in an interview with children with long-term health conditions; meanwhile, their primary caregivers finished the questionnaire independently. Data were analyzed using Wilcoxon tests, weighted kappa values, and Spearman's rank order correlation. Results: Children with long-term health conditions reported significantly lower attendance scores for six activity items (p < 0.05) and higher involvement scores for two activity items (p < 0.05) than their primary caregivers did. An overall slight to fair agreement in perceived participation was found at the child-caregiver dyad level, though differences in dyads were observed. A strong correlation was identified between the rank order of the most important activities for both groups (r = 0.81). Conclusions: Differences may exist between the perceived participation of children with long-term health conditions, as reported by primary caregivers and the children themselves. The findings highlight that children with long-term health conditions exhibit unique views with respect to their perceived participation and have to be asked regarding their perceptions themselves.

Testing the Assumptions in the Process of Cultural Competence in the Delivery of Healthcare Services Using Empirical Data, Focusing on Cultural Awareness.

INTRODUCTION: Encounters with children of foreign origin call for school nurses' cultural competence during the health visits. This study aimed to investigate the statistical associations between the cultural constructs described by the Process of Cultural Competence in the Delivery of Healthcare Services (PCCDHS) model and whether school nurses' cultural encounters, cultural knowledge, and cultural skill could statistically predict their cultural awareness. METHODOLOGY: Spearman correlation and hierarchical regression analyses were conducted using cross-sectional secondary data from 816 Swedish school nurses. The cultural constructs in the theoretical description of the PCCDHS model guided the selection and sorting of the items on cultural competence. RESULTS: The constructs of cultural knowledge, cultural skill, cultural encounters, and cultural awareness were positively correlated with each other. However, becoming culturally aware was not statistically predicted by included cultural constructs (R2 = 13.4, p = .06). DISCUSSION: Despite the interrelations between the investigated cultural constructs of the PCCDHS model, understanding cultural awareness development requires further empirical testing.

Structural validity and internal consistency of the Strengths and Stressors in Parenting (SSF) Questionnaire in parents of children with developmental disabilities.

The current study investigated the structural validity and internal consistency of the Strengths and Stressors (SSF) questionnaire. The SSF is used in Swedish habilitation services to measure the positive and negative consequences that the fostering of a child with a developmental disability can have on family functioning in six domains: parent's feelings and attitudes, social life, family finances, relationship to the other parent, siblings, and professional support. The proposed six-factor model was tested with confirmatory factor analysis with data collected from 291 parents of children with developmental disabilities. The six-factor model had an acceptable fit according to most fit indices, but two items were non-significant. Overall, the internal consistency was acceptable or good. The SSF, with the proposed six-factor solution, can be a useful tool when assessing parental perspectives on the impacts of having a child with a developmental disability in clinical settings and research.

Development and usability of an app-based instrument of participation in children with disabilities.

BACKGROUND: Picture My Participation (PmP) is a picture-supported child-report instrument of participation of children with disabilities. AIMS: This study described the development of a mobile application of the PmP Traditional Chinese version (PmP-C) and evaluated its usability. METHODS: The PmP-C App includes features that allow the input of a child's demographics, identification of frequency and involvement of 22 culturally appropriate activities, selection of the three most important activities and the specification of the environmental facilitators and barriers. The usability test was conducted with 10 healthcare workers, who interviewed 10 children with disabilities aged 6-12 years. The healthcare workers completed a usability questionnaire and were asked to provide feedback on the ease of use, learning, satisfaction and perceived usefulness. RESULTS: The mean score for the usability questionnaire ranged from 2.7 to 4.6 out of 5.0. The feedback indicated that the interface was simple to operate by the healthcare workers and was attractive and motivating to children. Improvements of layout design, operation instructions and technical problems were recommended, which contributed to the app program optimization. CONCLUSIONS: The PmP-C App provides a practical tool with initial support for usability to enable active engagement and communication of children with disabilities with healthcare providers.

Participation of children with long-term health conditions compared to that of healthy peers: A cross-sectional comparative study.

BACKGROUND: Knowledge is limited on attendance and involvement of perceived participation of children with long-term health conditions. AIMS: To evaluate the perceived participation of children with long-term health conditions and to compare their participation with that of healthy peers. MATERIAL AND METHODS: A cross-sectional comparative study was designed using self-reported data from 65 children with long-term health conditions and from 65 healthy peers, utilising the simplified Chinese version of Picture My Participation (PMP-C; Simplified). RESULTS: The frequency scores of children with long-term health conditions were significantly lower than those of healthy peers in terms of attendance for the total domain and for 13 activity items. The involvement scores of children with long-term health conditions were significantly lower than those of healthy children in 3 items. There was a strong correlation between rank orders of the most important activities for the two groups (r = 0.83). CONCLUSIONS: Children with long-term health conditions participated less in activities compared to healthy children. Further studies are required to investigate factors of the participation of children. SIGNIFICANCE: The PMP-C (Simplified) offered an opportunity for children to express their own perspectives of participation based on their individual experience of the activity.

Barriers and facilitators to participation in everyday activities for children with intellectual disabilities in China.

BACKGROUND: Children with intellectual disabilities (IDs) are vulnerable and participate less in everyday activities compared to their peers with typical development. This study aimed to identify barriers and facilitators related to the participation in everyday activities of children with IDs in China. METHODS: Twenty semi-structured interviews were conducted with primary caregivers of children with IDs from special schools in Tianjin, China. The data were transcribed and analysed using inductive qualitative content analysis. RESULTS: Four categories of barriers to participation in everyday activities for children with IDs were identified: insufficient knowledge, attitudes and skills in primary caregivers; ID-related characteristics of children; stigma and Chinese culture; and lack of support from society. Four categories describing facilitators of participation in everyday activities for children with IDs were also identified: the optimistic attitude of the primary caregiver; adequate family support; active environment in school and policy; and attractive characteristics of children with IDs. CONCLUSIONS: The findings in this study add knowledge on important barriers and facilitators affecting the participation of children with IDs in everyday activities in China. The primary caregivers' voices need to be heard by government and society. Appropriate and effective changes in family-oriented services and the legal, social, political and economic context of the child welfare management system for the scale-up of improving participation should be implemented for children with IDs.

Individual patterns of problems with participation, activity, body function and environment in everyday life for children who completed brain tumor treatment.

PURPOSE: The study purpose was to, with the help of ICF and the CPS model, describe and explain patterns of co-occurring problems with participation in everyday life activities, body functioning and environment for children who completed brain tumor treatment. MATERIALS AND METHODS: Hospital, habilitation and school records for nine children (5-11 yrs.) diagnosed with brain tumor, were retrospectively reviewed for everyday problems after treatment completion. These problems were linked to ICF codes. Median code distribution within ICF constructs participation, body function, body structure, activity, and environment were calculated to generate typical (close to median) and atypical (distant from median) patterns of problems on individual and group levels. Two children were in-depth analyzed with collaborative problem-solving (CPS) model to identify participation problems and plausible explanations. RESULTS: In total, 4543 ICF linked codes revealed similarities and differences between individuals. The selected child-cases displayed educational challenges and peer-relational problems. The ICF codes related to activity, body function and environment revealed plausible explanations for the children's documented problems with participation in everyday life. CONCLUSIONS: The combination of ICF and CPS can provide a comprehensive view of the child's problems and guide development of participation in everyday life-focused interventions for children treated for brain tumors.Implications for rehabilitationCare should be guided by interventions and support directed at individual children and their everyday life.The International Classification of Functioning, Disability and Health (ICF) framework can support identification of the individual child's patterns of problems and how these affects the child's everyday life.It is recommended to start by identifying participation problems when using ICF to identify and describe problems in children's natural settings.The collaborative problem-solving model can guide healthcare, habilitation and school services when identifying and acting on typical and atypical problem patterns experienced by these children.

Increasing participation in computer activities using eye-gaze assistive technology for children with complex needs.

PURPOSE: Eye-gaze assistive technology offers children with severe motor and communication difficulties the opportunity to access and control a computer through eye movements. The aim of this study was to examine the impact of eye-gaze assistive technology intervention on participation in computer activities and technology usability among children with complex needs in Taiwan. MATERIALS AND METHODS: This study involved a multiple baseline design across individuals. The participants were four children aged three to six years with severe motor and communication difficulties and low eye-control skills. The six-month intervention consisted of two collaborative team meetings and 12 individual supports to facilitate the use of eye-gaze assistive technology at home or in educational environments. Participation in computer activities (diversity, frequency, and duration) was repeatedly measured through a computer use diary. Other outcomes included assessments of goal achievements and parents/teachers' ratings on children's performance in computer activities. RESULTS: The young children increased the diversity of their computer activities and their frequency and duration of computer use from baseline to the intervention phase. The children attained six of eight predefined goals related to play, communication, and school learning. Parents and teachers perceived the children's changes in performance as meaningful. CONCLUSION: This study strengthens the evidence that eye-gaze assistive technology is useful in everyday contexts for children with complex needs in Taiwan. The findings add knowledge that children with weak eye-control skills increased participation in computer activities as a result of the eye-gaze assistive technology. Implications for RehabilitationEye-gaze assistive technology (EGAT) as an access method to control a computer can provide opportunities for children with severe motor and communication difficulties to participate in computer activities.Children with severe motor and communication difficulties and low eye-control skills with sufficient practice can learn to use EGAT for communication and learning, with support from stakeholders and collaborative service.EGAT could be introduced for children with complex needs at early ages as a means of using computers for play, communication, and school learning, which could be helpful for later education and learning.Stakeholders in educational environments could include EGAT in educational computer systems so that pupils with severe motor and communication difficulties could interact with a computer, thereby enhancing their engagement and learning.

The utility of the International Classification of Functioning construct as a statistical tool - operationalizing mental health as an indicator of adolescent participation.

BACKGROUND: The ICF provides a common scientific language for the study of health and functioning. Adolescent mental health, operationalized as engagement in life situations, is one aspect of functioning. Engagement as mental health has a bi-directional relation with environmental factors. AIM: To test the statistical utility of the International Classification of Functioning (ICF) classification in coding adolescent mental health and mental health problems. METHODS: Using data measuring mental health in a representative Swedish sample of 12-13-year-olds linking responses to the classification codes. The internal structure of the classification system constructs was tested using factor analysis. RESULTS: A factorial solution could be found for most chapters indicating that the ICF framework and coding system could be used; however, the variance explained was quite low. Linking worked better at code-level, rather than chapter level. Items measuring risk behavior or risk factors are loaded in separate constructs. CONCLUSIONS: When coding items for statistical purposes, code-level rather than chapter level is to be preferred. Also, participation in risk behavior loads in separate factors indicating that these behaviors are separate from other types of participation.Implications for rehabilitationConsidering some challenges with varying level of detail in the ICF-CY's chapters, the framework can be used to identify the content of mental health questionnaires to be used in rehabilitation.To provide more detailed information in rehabilitation addressing mental health, a code-level solution is more appropriate than a chapter level solution.Despite the use of same ICF-CY codes, negative participation, i.e., risk behavior, measures a different dimension than positive participation, is especially relevant in rehabilitation addressing mental health.

Test-retest reliability of Picture My Participation in children with intellectual disability in South Africa.

BACKGROUND: Picture My Participation (PmP) is a promising instrument for measuring the participation in everyday situations of children with intellectual disability (ID), particularly in low- and middle-income countries. AIM: To explore test-retest reliability of PmP by comparing two repeated measurements of children with ID in an urban context in South Africa. METHODS: A picture-supported interview with 31 children with ID, aged 7-17 years, was conducted twice, two weeks apart. The children rated their participation, operationalised as attendance and involvement, in 20 everyday activities. Analyses were completed for total scores, for the four subcomponents and at item level. RESULTS: Test-retest agreement at an item level for both attendance and involvement showed slight/fair agreement for most activities (Kappa = 0.01-0.40), and moderate agreement for some activities (Kappa = 0.41-0.60). Moderate agreement was shown for the total scale and at component level (ICC = 0.5-0.75), except for (firstly) attendance of and involvement in 'Family Activities' (ICC = 0.26 for attendance, 0.33 for involvement), and (secondly) involvement in 'Personal Activities' (ICC = 0.33). CONCLUSION: The result indicates that PmP can reliably be used at component level and as a screening tool for intervention planning to identify participation and participation restrictions in children with ID.

Trajectories of participation, mental health, and mental health problems in adolescents with self-reported neurodevelopmental disorders.

PURPOSE: Having a neurodevelopmental disorder (NDD) increases the risk of mental health problems and lower participation. We investigated the trajectories of mental health problems and participation in adolescents with NDD and compared these with trajectories for peers without NDD. In addition, the relationship between participation, mental health (well-being), and mental health problems were investigated. MATERIALS AND METHODS: Data from a Swedish longitudinal survey study (LoRDIA) was used and adolescents with and without self-reported NDD were followed from 12/13 to 17 years, in three waves. Mental health problems were measured using the Strength and Difficulties Questionnaire, and well-being was measured with the Mental Health Continuum short form. RESULTS: Adolescents with NDD experience more mental health problems than adolescents without NDD. Hyperactivity, a key feature of NDD, remains stable, while emotional problems and psychosomatic complaints, increase over time for girls, independent of NDD. Participation is stable over time but is more related to well-being than to NDD or mental health problems. CONCLUSIONS: Gender is an important factor with girls exhibiting more problems. Mental health explains more of the variation in participation than mental health problems and NDD. Probably participation intervention can enhance mental health which may protect from mental health problems.Implications for rehabilitationMental health, i.e., emotional-, social-, and psychological well-being is more strongly related to participation and to reduced levels of mental health problems than having an NDD or not, thus assessing mental health separately from measuring NDD is important.Interventions focusing on participation may lead to higher mental health and having high mental health (flourishing) may facilitate participation.Girls with self-reported NDD seem to have a higher burden of mental health problems, especially if they also are languishing, i.e., having low mental health, therefore a strong focus on this group is needed both in research and clinical practice.Half of all adolescents are flourishing, independently of NDD or not, even if they are experiencing some symptoms of mental health problems, adolescents with NDD who are also languishing, have much higher ratings of mental health problems.