The Participation of Disabled Children and Young People: A Social Justice Perspective

There is an increasing expectation that children, young people and their parents should participate in decisions that affect them. This includes decisions about their health and social care and collective or public decisions about the way in which such services are designed, delivered and evaluated. Indeed this has become a policy priority across the United Kingdom. The participation of disabled children and young people, however, has been slow to develop in the United Kingdom and concerns have been expressed about progress in this area. Drawing on the results of an Economic and Social Research Council-funded, mixed-methods study, the aim of this article is to explore the participation of disabled children and young people through a social justice lens. Participants, recruited by purposeful sampling, included 18 disabled children and young people, 77 parents and 90 professionals from one health and social care trust in Northern Ireland. There were four phases of data collection: surveys to parents and professionals, parent interviews, interviews with children and young people using creative and participatory techniques, and a focus group with professionals. Results showed that for most disabled children and young people, decision-making was firmly grounded in a family-centred model. However, when children and young people were drawn into participatory processes by adults and recognised as partners in interactions with professionals, they wanted more say and were more confident about expressing their views. Choices, information and resources were at times limited and this had a key impact on participation and the lives of these children, young people and their parents. The article concludes by exploring implications for further research and practice. The need for a two-pronged, social justice approach is recommended as a mechanism to advance the participation agenda.

The participation of disabled children, young people and their parents in health and social care. Implications for policy and practice

No abstract available

The participation of children and young people: children, young people, parents and professionals together

No abstract available

Participation of Smallholders in Agroforestry Agri-Environmental Scheme: A lesson from the rural Mount Kenya region

The likelihood of smallholder farmers not participating in agroforestry agri-environmental schemes and payments for ecosystem services (PES) may be due to limited farmland endowment and formal credit constraints. These deficits may lead to an ‘exclusive club’ of successful farmers, which are not necessarily poor, enjoying the benefits of agri-environmental schemes and PES although agrienvironmental schemes and PES have been devised as a means of fostering rural sustainable development and improving the livelihood of poor smallholder farmers. Smallholder farmers in parts of rural Kenya continue to enroll in ‘The International Small Group Tree Planting Programme’ (TIST), an agri-environmental scheme, promoting agroforestry, carbon sequestration and conservation agriculture (CA). The question remains if these farmers are really poor? This study examines factors that determine the participation of smallholder farmers in TIST in parts of rural Kenya. We use survey data compiled in 2013 on 210 randomly selected smallholder farmers from Embu, Meru and Nanyuki communities; the sample consists of TIST and non-TIST members. A random utility model and logit regression were used to test a set of non-monetary and monetary factors that influence participation in the TIST. The utility function is conceptualized to give non-monetary factors, particularly the common medium of communication in rural areas – formal and informal – a central role. Furthermore, we investigate other factors (incl. credit accessibility and interest rate) that reveal the nature of farmers participating in TIST. The findings suggest that spread of information via formal and informal networks is a major driver of participation in the TIST program. Furthermore, variables such credit constrains, age and labour supply positively correlate with TIST participation, while for education the opposite is true. It is important to mention that these correlations, although somewhat consistent, were all found to be weak. The results indicate that participation in the TIST program is not influenced by farm size; therefore we argue that the TIST scheme is NOT an ‘exclusive club’ comprising wealthy and successful farmers. Older farmers’ being more likely to join the TIST is an argument for their long- rather than widely assumed short-term planning horizon and a new contribution to the literature. Given the importance of poverty alleviation and climate smart agriculture in developing countries, sustainable policy should strengthening the social and human capital as well as informal networks in rural areas. Extension services should effectively communicate benefits to less educated and credit constrained farmers.

Interactions of 1-Methylimidazole with UO2(CH3CO2)2 and UO2(NO3)2: Structural, Spectroscopic and Theoretical Evidence for Imidazole Binding to the Uranyl Ion

The first definitive high-resolution single-crystal X-ray structure for the coordination of the 1-methylimidazole (Meimid) ligand to UO2(Ac)2 (Ac = CH3CO2) is reported. The crystal structure evidence is confirmed by IR, Raman, and UV-vis spectroscopic data. Direct participation of the nitrogen atom of the Meimid ligand in binding to the uranium center is confirmed. Structural analysis at the DFT (B3LYP) level of theory showed a conformational difference of the Meimid ligand in the free gas-phase complex versus the solid state due to small energetic differences and crystal packing effects. Energetic analysis at the MP2 level in the gas phase supported stronger Meimid binding over H2O binding to both UO2(Ac)2 and UO2(NO3)2. In addition, self-consistent reaction field COSMO calculations were used to assess the aqueous phase energetics of combination and displacement reactions involving H2O and Meimid ligands to UO2R2 (R = Ac, NO3). For both UO2(NO3)2 and UO2(Ac)2, the displacement of H2O by Meimid was predicted to be energetically favorable, consistent with experimental results that suggest Meimid may bind uranyl at physiological pH. Also, log(Knitrate/KAc) calculations supported experimental evidence that the binding stoichiometry of the Meimid ligand is dependent upon the nature of the reactant uranyl complex. These results clearly demonstrate that imidazole binds to uranyl and suggest that binding of histidine residues to uranyl could occur under normal biological conditions.

Troubled Geographies: A Spatial History of Religion and Society in Ireland

Ireland’s landscape is marked by fault lines of religious, ethnic, and political identity that have shaped its troubled history. Troubled Geographies maps this history by detailing the patterns of change in Ireland from 16th century attempts to “plant” areas of Ireland with loyal English Protestants to defend against threats posed by indigenous Catholics, through the violence of the latter part of the 20th century and the rise of the “Celtic Tiger.” The book is concerned with how a geography laid down in the 16th and 17th centuries led to an amalgam based on religious belief, ethnic/national identity, and political conviction that continues to shape the geographies of modern Ireland. Troubled Geographies shows how changes in religious affiliation, identity, and territoriality have impacted Irish society during this period. It explores the response of society in general and religion in particular to major cultural shocks such as the Famine and to long term processes such as urbanization.

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.

Guideline on the design and conduct of cystic fibrosis clinical trials: The European Cystic Fibrosis Society–Clinical Trials Network (ECFS-CTN)

We describe the rationale for disease specific research networks in general as well as the aims and function of the European Cystic Fibrosis Society-Clinical Trials Network (ECFS-CTN) specifically. The ECFS-CTN was founded in 2009 with the aim of improving the quality and quantity of clinical research in the area of cystic fibrosis (CF) in Europe. A network of 18 clinical trial sites in 8 European countries was established according to uniform state-of-the-art quality criteria. To support the ECFS-CTN in the acquisition, planning and conduct of clinical trials, the network is equipped with a coordinating centre, steering and executive committees, and committees for protocol review, standardization, training and networking as well as a data safety monitoring board. A strong partnership with European CF patient parent organizations aims to increase awareness of the need for efficient clinical research and the participation of patients in clinical trials.

Transgressing Contemporary Boundaries:The Narrator as True Custodian of Cultural Knowledge in Ulster Society

Historically in Gaelic culture, the bard was greatly valued and admired as an important and integral part of society. Travelled, schooled and specifically trained in their art, the bard helped ensure identity and reassurance for Gaelic families by grounding them both temporarily and spatially into their landscape. Entrusted with the duty and responsibility of recording place and event, the bards worked without writing and by transgressing man-made boundaries, travelled throughout the land weaving their histories into the very fabric of society.

Now no longer with us, we find ourselves without the distinguished chronicler to undertake this duty. Yet the responsibility of the Gaelic bard is one still shared by all artists today; to facilitate memory and identity, whether good or bad. Many Ulster writers, by happenstance and geography have found themselves located in a place of painful histories. An immediate difficulty for those local writers becomes manifest by being intrinsically implicated into those histories – whilst having first-hand knowledge and comprehension beyond that of the outsider, the local writer is automatically damned by association and relationship, thereby tarnishing their voice in comparison to the perceived impartiality of others.
Some writers however have successfully sought ways to escape this limitation and have worked in ways that can transgress the restrictions of prejudgement. John Hewitt, by purposely becoming a self-imposed tourist was able to distance himself to write impartially about the past, recognising that ’the place without its ghosts is a barren place.’1 In ‘The Colony’,2 tradition, peoples and mapping of the land are all narrated by Hewitt in a similar way to the Gaelic bardic topographic poems of Sean O'Dubhagain and Giolla Na Naomh O'Huidhrin3 in compiling a rich cultural atlas.

Similarly the Belfast poet and novelist Ciaran Carson also writes and records the city from an intermediary position; that of translator. Mediating between reader and aisling,4 Carson himself takes the reader on a journey into name, meaning, time and place, focusing primarily on the city of Belfast, familiar in name but impenetrable in depth to most.

Furthermore, this once-forgotten tradition to chronicle is now being continued by the new breed of Irish crime writers where the likes of Brian McGilloway, Stuart Neville and Adrian McKinty can, by way of the crime novel, accurately record contemporary society. Thus, ghost estates, listed buildings, archaeological digs, street and city have all provided setting and subject matter for recent novels. Moreover by choosing the ‘outsider from within’ as their chief protagonist, whether detective or criminal, each author is able to transgress the boundaries of prejudice and preconception that hinder genuine understanding and knowledge.

Looking in turn at the Gaelic bard, the twentieth century Ulster poet and the new breed of Irish crime writer, the authors will outline the real value of the narrator, by being able to act as cultural transgressor beyond the seeming and alleged as the true chronicler in society, and then with specific reference to city and countryside in Ireland, as a valuable custodian of knowledge in architecture and place.

Keywords
Architecture, Crime Fiction, Cultural Atlas, Place, Poetry.

1 From ‘The Bloody Brae’, a one act play written by John Hewitt in the 1930’s.
2 Hewitt, J. (1968) published in Collected Poems 1932-67. London:McGibbon & Kee.
3 Lengthy and detailed medieval Gaelic poems composed in the fourteenth and fifteenth centuries first edited by John O'Donovan in 1862 for the Irish Archaeological and Celtic Society in Dublin.
4 The aisling is the Irish song or poem genre when the poet is visited by their muse in a daydream or dream-vision state.

The Reliability and Validity of a Child and Adolescent Participation in Decision Making Questionnaire

Background
There is a growing impetus across the research, policy and practice communities for children and young people to participate in decisions that affect their lives. Furthermore, there is a dearth of general instruments that measure children and young people’s views on their participation in decision making. This paper presents the reliability and validity of the Child and Adolescent Participation in Decision Making Questionnaire (CAP-DMQ) and specifically looks at a population of looked-after children where a lack of participation in decision making is an acute issue.
Methods
The participants were 151 looked after children and adolescents between 10-23 years of age who completed the 10 item CAP-DMQ. Of the participants 113 were in receipt of an advocacy service that had an aim of increasing participation in decision-making with the remaining participants not having received this service.
Results
The results showed that the CAP-DMQ had good reliability (Cronbach’s alpha = .94) and showed promising uni-dimensional construct validity through an exploratory factor analysis. The items in the CAP-DMQ also demonstrated good content validity by overlapping with prominent models of child and adolescent participation (Lundy 2007) and decision making (Halpern 2014). A regression analysis showed that age and gender were not significant predictors of CAP-DMQ scores but receipt of advocacy was a significant predictor of scores (effect size d=.88), thus showing appropriate discriminant criterion validity.
Conclusion
Overall, the CAP-DMQ showed good reliability and validity. Therefore, the measure has excellent promise for theoretical investigation in the area of child and adolescent participation in decision making and equally shows empirical promise for use as a measure in evaluating services which have increasing the participation of children and adolescents in decision making as an intended outcome.

Exclusion and Marginalisation in Adolescence: The Experience of School Exclusion on Drug Use and Antisocial Behaviour

Young people excluded from school are a group at an increased risk to drug use and antisocial behaviour during adolescence and later marginalisation and exclusion from society in adulthood (Blyth and Milner, 1993). As part of the Belfast Youth Development Study, a longitudinal study of the onset and development of adolescent drug use, young people who entered post primary school in 2000 (aged 11/12 years) were surveyed annually on four occasions. This paper reports on findings from this survey in relation to a supplementary group of young people who were surveyed because they had been excluded from school. The findings show higher levels of drug use and antisocial behaviour among school excludees, lower levels of communication with their parents/guardians, higher levels of contact with the criminal justice system and increased likelihood of living in communities characterised with neighbourhood disorganisation. This lifestyle perhaps suggests these young people are leading a life that is already taking them towards the margins of society.