‘Supra-stewardship’: A Tool for Citizen Participation in European Union Pandemic Preparedness Planning

This article proposes developing the public bioethics aspect of stewardship and applying it to the EU as ‘supra-stewardship’, a tool for opening a discursive space for citizen participation in EU preparedness planning. With this in mind the article highlights some of the contours for engagement on the boundaries of responsibility and the production of governance distortions and failures brought out by attention to framing, distribution, vulnerability and learning. This should help citizens to tackle the complementary expert and public rationalities that undermine their involvement, contribute supplementary knowledge towards governance, and help promote institutional learning by the EU and resilience.

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.

Multiprofessional Views on Older Patients' Participation in Care Planning Meetings in a Hospital Context

Care planning meetings (CPMs; sometimes referred to as family meetings) for older patients involve group decision-making between the multidisciplinary team, the older person and their family. However, service user participation is challenged by the inequity of knowledge and power between participants, together with organisational and resource pressures for timely discharge. The effective use and perhaps, potential misuse of communication strategies within CPMs is of ethical concern to all participants. Habermas' essential critique of participatory communication provides insight as to how older people's involvement can be either enabled or blocked by healthcare professionals (HCPs) depending on their use of communication strategies. Seven discipline-specific mini-focus groups provided an opportunity for HCPs to reflect on the participation of patients over 65 and their families in CPMs. Findings explore HCPs' understanding of older patients involvement based on key dimensions of communicative participation, namely, mutuality, inclusiveness, patient centredness and clear outcomes. Whilst the benefits of collaborative decision-making were confirmed, legitimate concerns as to the quality of participatory practices, limited attention to group work processes and the exclusion of older patients with cognitive impairment were identified. © 2013 Copyright British Association of Social Workers.

Stakeholder Participation in Marine Spatial Planning:Lessons from the Channel Islands National Marine Sanctuary

Stakeholder participation is advanced as a key element of marine spatial planning (MSP) by the U.S. Interagency Ocean Policy Task Force. It provides little guidance, however, regarding stakeholder participation. We argue that much can be learned from existing ecosystem-based marine management initiatives. The Channel Islands National Marine Sanctuary, which utilizes an advisory council to facilitate stakeholder participation, is evaluated in this article with a view to identifying key lessons for new MSP initiatives. A set of criteria, derived from collaborative planning theory, is employed to evaluate the effectiveness of this approach. The advisory council meets some criteria for effective stakeholder participation but is found to be lacking in key elements, including shared purpose and interdependency. Benefits associated with stakeholder participation are constrained accordingly. Deficiencies in the design of the council and its decision-making procedures, requiring attention in order to facilitate more effective stakeholder participation in new MSP initiatives, are highlighted. © 2012 Copyright Taylor and Francis Group, LLC.