Association between participation in life situations of children with cerebral palsy and their physical, social, and attitudinal environment:A cross-sectional multicenter European study

Objective:
To evaluate how participation of children with cerebral palsy (CP) varied with their environment.

Design:
Home visits to children. Administration of Assessment of Life Habits and European Child Environment Questionnaires. Structural equation modeling of putative associations between specific domains of participation and environment, while allowing for severity of child's impairments and pain.

Setting:
European regions with population-based registries of children with CP.

Participants:
Children (n=1174) aged 8 to 12 years were randomly selected from 8 population-based registries of children with CP in 6 European countries. Of these, 743 (63%) agreed to participate; 1 further region recruited 75 children from multiple sources. Thus, there were 818 children in the study.

Interventions:
Not applicable.

Main Outcome Measure:
Participation in life situations.

Results:
For the hypothesized associations, the models confirmed that higher participation was associated with better availability of environmental items. Higher participation in daily activities—mealtimes, health hygiene, personal care, and home life—was significantly associated with a better physical environment at home (P<.01). Mobility was associated with transport and physical environment in the community. Participation in social roles (responsibilities, relationships, recreation) was associated with attitudes of classmates and social support at home. School participation was associated with attitudes of teachers and therapists. Environment explained between 14% and 52% of the variation in participation.

Conclusions:
The findings confirmed the social model of disability. The physical, social, and attitudinal environment of disabled children influences their participation in everyday activities and social roles.

Addressing inequalities in physical activity participation: Implications for public health policy and practice

OBJECTIVE: To investigate the characteristics of those doing no moderate-vigorous physical activity (MVPA) (0days/week), some MVPA (1-4days/week) and sufficient MVPA (≥5days/week) to meet the guidelines in order to effectively develop and target PA interventions to address inequalities in participation.

METHOD: A population survey (2010/2011) of 4653 UK adults provided data on PA and socio-demographic characteristics. An ordered logit model investigated the covariates of 1) participating in no PA, 2) participating in some PA, and 3) meeting the PA guidelines. Model predictions were derived for stereotypical subgroups to highlight important policy and practice implications.

RESULTS: Mean age of participants was 45years old (95% CI 44.51, 45.58) and 42% were male. Probability forecasting showed that males older than 55years of age (probability=0.20; 95% CI 0.11, 0.28), and both males (probability=0.31; 95% CI 0.17, 0.45) and females (probability=0.38; 95% CI 0.27, 0.50) who report poor health are significantly more likely to do no PA.

CONCLUSIONS: Understanding the characteristics of those doing no MVPA and some MVPA could help develop population-level interventions targeting those most in need. Findings suggest that interventions are needed to target older adults, particularly males, and those who report poor health.

Frequency of participation of 8-12 year old children with cerebral palsy: a multi-centre cross sectional European study

Participation in home, school and community is important for all children; and little is known about the frequency of participation of disabled children. Frequency of participation is a valuable outcome measure for evaluating habilitation programmes for disabled children and for planning social and health services.

We investigated how frequency of participation varied between children with cerebral palsy and the general population; and examined variation across countries to understand better how the environmental factors such as legislation, public attitudes and regulation in different countries might influence participation.

We undertook a multi-centre, population-based study in children with and without cerebral palsy. Working from the Life-H instrument, we developed a questionnaire to capture frequency of participation in 8–12-year-old children. In nine regions of seven European countries, parents of 813 children with cerebral palsy and 2939 children from the general populations completed the questionnaire.

Frequency of participation for each question was dichotomised about the median; multivariable logistic regressions were carried out.

In the general population, frequency of participation varied between countries. Children with cerebral palsy participated less frequently in many but not all areas of everyday life, compared with children from the general population. There was regional variation in the domains with reduced participation and in the magnitude of the differences. We discuss how this regional variation might be explained by the different environments in which children live. Attending a special school or class was not associated with further reduction in participation in most areas of everyday life.

Participation of 8-12 year old children with cerebral palsy: a cross-sectional European Survey

Objectives
To evaluate how involvement in life situations (participation) in children with cerebral palsy varies with type and severity of impairment and to investigate geographical variation in participation.

Design
Cross sectional study. Trained interviewers visited parents of children with cerebral palsy; multilevel multivariable regression related participation to impairments, pain, and sociodemographic characteristics.

Setting
Eight European regions with population registers of children with cerebral palsy; one further region recruited children from multiple sources.

Participants
1174 children aged 8-12 with cerebral palsy randomly selected from the population registers, 743 (63%) joined in the study; the further region recruited 75 children.

Main outcome measure
Children’s participation assessed by the Life-H questionnaire covering 10 main areas of daily life. Scoring ignored adaptations or assistance required for participation.

Results
Children with pain and those with more severely impaired walking, fine motor skills, communication, and intellectual abilities had lower participation across most domains. Type of cerebral palsy and problems with feeding and vision were associated with lower participation for specific domains, but the sociodemographic factors examined were not. Impairment and pain accounted for up to a sixth of the variation in participation. Participation on all domains varied substantially between regions: children in east Denmark had consistently higher participation than children in other regions. For most participation domains, about a third of the unexplained variation could be ascribed to variation between regions and about two thirds to variation between individuals.

Conclusions
Participation in children with cerebral palsy should be assessed in clinical practice to guide intervention and assess its effect. Pain should be carefully assessed. Some European countries facilitate participation better than others, implying some countries could make better provision. Legislation and regulation should be directed to ensuring this happens.

To what extent do children with cerebral palsy participate in everyday life situations?

The aims of the study are to describe participation of children with cerebral palsy in everyday life situations, to investigate the relationship between participation (primary outcome variable) with child and parent characteristics (independent variables) and to compare the frequency of participation (secondary outcome variable) of children with cerebral palsy with children without disabilities. A cross-sectional survey of parents of children with cerebral palsy in Northern Ireland was undertaken in families’ homes using standard questionnaires. Children with cerebral palsy born between 31/8/1991 and 1/4/1997 were identified from a case register of people with the condition. A total of 102 parents opted in (51% response rate). Questionnaires included the Life Habits Questionnaire (Life-H) to measure difficulties in participation and The Frequency of Participation Questionnaire (FPQ), to measure frequency of participation with comparative data for children without disability. Overall, children with cerebral palsy participated less often than their non-disabled peers across a number of lifestyle and cultural pursuits. Among the 102 children with cerebral palsy, participation in ‘relationships’ was the least disrupted area of everyday life and aspects of ‘school’, ‘personal care’ and ‘mobility’ were the most disrupted. Children with cerebral palsy and severe co-impairments were significantly less likely to experience higher levels of participation in most areas of everyday life when compared to children with cerebral palsy and no severe co-impairments. Child physical and psychological well-being did not influence participation although higher parenting stress was significantly related to lower child participation in ‘community activities’. Participation is an important health outcome for children with cerebral palsy and should be incorporated in routine clinical practice. Professionals have a role to play both at the level of addressing individual child and family needs as well as influencing legislation and policy to ensure improved access to services and local communities.

Class inequalities in educational attainment among the adult population in the Republic of Ireland

Substantial increases in participation rates at secondary and third level in recent years have often been assumed to be associated with increased equality of opportunity. However, there is little evidence from elsewhere that expansion per se, except when it takes the form of saturation of the demand from higher classes, leads to a reduction in class inequalities. In exploring the factors that contribute to trends over time, or to a distinctive position in comparison with other countries, we have drawn on the recent literature to argue that the crucial factors are those which affect decisions to continue in education. We have also operated on the assumption that students and their parents rationally consider the costs and benefits associated with educational choices. The most recent evidence relating to the adult population provides no support for the existence of any trend towards equality of educational opportunity. It is, rather consistent with the class reproduction perspective that stresses the ability of privileged classes to maintain their advantages.

Participatory Sonic Arts: towards a socially engaged art of sound in the everyday (The Som da Maré Project)

Participatory and socially engaged art practices have, for a couple of decades, emerged a myriad of aesthetic and methodological strategies across different media. These are artistic practices that have a primary interest in participation, affecting social dynamics, dialogue and at times political activism. Nato Thompson in “Living Form: Socially Engaged Art from 1991-2011” surveys these
practices, which range from theatre to urban planning, visual art to healthcare. Linked to notions such as relational aesthetics (Bourriaud, 1998), community art and public art, socially engaged art often focuses on the development of a sense of ownership by the part of participants. If an artist is working truly collaboratively with participants and addressing the reality of a particular community, the long-term effect of a project lies in the process of engagement as well as in the artwork itself. Projects by New York based artist Pablo Helguera, for example, use different media to engage with social inequalities through participative action while rejecting the notion of art for art sake.

“Socially engaged art functions by attaching itself to subjects and problems that normally belong to other disciplines, moving them temporarily into a space of ambiguity. It is this temporary snatching away of subjects into the realm of art-making that brings new insights to a particular problem or condition and in turn makes it visible to other disciplines.” (Helguera, 2011)

Socially engaged practices develop the notion of artwork about or by a community, to work of a community. In this chapter we address how socially engaged, participatory approaches can form a context for the sonic arts, arguably less explored than practices such as theatre and performance art. The use of sound is clearly present in a wide range of socially engaged work (e.g. Helguera’s “Aelia Media” enabling a nomadic radio station in Bologna or Maria Andueza “Immigrant Sounds – Res(on)Art (Stockholm)” exploring ways of sonically resonating a city, or Sue MacCauley’s “The Housing Project” addressing ways of representing the views of urban dwellers on public scape through sound art. It is nevertheless rare to encounter projects which take our experience of sound in the everyday as a trigger for community social engagement in a participatory context.
We address concepts and methodologies behind the project Som da Maré, a participatory sonic arts project in the favelas of Maré, Rio de Janeiro.

The making of professionals: Embedded civil society development in a transition country

The paper addresses the development of non-governmental organisations (NGOs) in transition settings. Caught in the balance of knowledge exchange and translation of ideas from abroad, organisations in turbulent setting legitimise their existence by learning through professional networks. By association, organisational actors gain acknowledgement by their sector by traversing the corridors of influence provided by international partnerships. What they learn is how to conduct themselves as agents of change in society, and how to deliver on stated missions and goals, therefore, legitimising their presence in a budding civil society at home. The paper presents a knowledge production and learning practices framework which indicates a presence of dual identity of NGOs - their “embeddedness” locally and internationally. Selected framework dimensions and qualitative case study themes are discussed with respect to the level of independence of organisational actors in the East from their partners in the West in a post-socialist context. A professional global civil society as organisations are increasingly managed in similar, professional ways (Anheier & Themudo 2002). Here knowledge “handling” and knowledge “translation” take place through partnership exchanges fostering capable and/or competitive change-inducing institutions (Czarniawska & Sevon 2005; Hwang & Suarez 2005). How professional identity presents itself in the third sector, as well as the sector’s claim to expertise, need further attention, adding to ongoing discussions on professions in institutional theory (Hwang & Powell 2005; Scott 2008; Noordegraaf 2011). A conceptual framework on the dynamic involved for the construction professional fields follows: • Multiple case analysis provides a taxonomy for understanding what is happening in knowledge transition, adaptation, and organisational learning capacity for NGOs with respect to their role in a networked civil society. With the model we can observe the types of knowledge produced and learning employed by organisations. • There are elements of professionalisation in third sector work organisational activity with respect to its accreditation, sources and routines of learning, knowledge claims, interaction with the statutory sector, recognition in cross-sector partnerships etc. • It signals that there is a dual embeddedness in the development of the sector at the core to the shaping the sector’s professional status. This is instrumental in the NGOs’ goal to gain influence as institutions, as they are only one part of a cross-sector mission to address complex societal problems The case study material highlights nuances of knowledge production and learning practices in partnerships, with dual embeddedness a main feature of the findings. This provides some clues to how professionalisation as expert-making takes shape in organisations: • Depending on the type of organisations’ purpose, over its course of development there is an increase in participation in multiple networks, as opposed to reliance on a single strategic partner for knowledge artefacts and practices; • Some types of organisations are better connected within international and national networks than others and there seem to be preferences for each depending on the area of work; • The level of interpretation or adaptation of the knowledge artefacts is related to an organisation’s embeddedness locally, in turn giving it more influence within the network of key institutions; An overreaching theme across taxonomy categories (Table 1)is “professionalisation” or developing organisational “expertise”, embodied at the individual, organisational, and sector levels. Questions relevant to the exercise of power arise: Is competence in managing a dual embeddedness signals the development of a dual identity in professionalisation? Is professionalisation in this sense a sign of organisations maturing into more capable partners to the arguably more experienced (Western) institutions, shifting the power balance? Or is becoming more professional a sign of domestication to the agenda of certain powerful stakeholders, who define the boundaries of the profession? Which dominant dynamics can be observed in a broadly-defined transition country civil society, where individual participation in the form of activism may be overtaking the traditional forms of organised development work, especially with the spread of social media?