From Substitute to Supported Decision-Making: Participatory Action Research on the Convention on the Rights of Persons With Disabilities

2021 ◽  
pp. 104420732110554
Author(s):  
Benoît Eyraud ◽  
Iuliia Taran

In this article, we present findings from a participatory action-research program in France on the exercise of human rights and supported and substitute decision-making, inspired by the United Nations Convention on the Rights of Persons with Disabilities (“CRPD”). Bringing together persons with the lived experience of disability, academics, and health and social care and support professionals, the project used the method of “experience-based construction of public problem” to transform experience into collective expertise. This enabled the exploration of support that people in vulnerable situations, whose capacity to exercise their human rights has weakened, need to make decisions in their lives and participate meaningfully in public debate. The relationship between the awareness of rights and exercise of rights is discussed. We argue for the need to balance out the positions of different contributors in participatory action research, in a reasoned manner, by recognizing the scientific and citizen-based participation of all partners.

2017 ◽  
Vol 9 (1) ◽  
pp. e4-e4 ◽  
Author(s):  
Glenys Caswell ◽  
Beth Hardy ◽  
Gail Ewing ◽  
Sheila Kennedy ◽  
Jane Seymour

BackgroundFamily carers are crucial in enabling dying people to stay at home, but are often not prepared for their caring role, receiving little support from formal health and social care services. It is increasingly likely that any help or support family carers receive will be provided by a third sector organisation on either a voluntary basis or by untrained carer support workers.ObjectivesTo produce a training programme designed to equip carer support workers and volunteers with the basic skills and knowledge needed to support family carers.Process of developmentParticipatory action research, a collaborative form of working in which those who are affected by an issue take a lead role in the research, was used. Bereaved carers acting as research partners, support workers and representatives of third sector organisations took an active part in designing, developing, piloting and refining the programme in a number of interlinked stages. During development, the programme was piloted on four occasions and evaluated by 36 trainees and 3 trainers.Final training programmeThe outcome of the project is an innovative, 1-day training programme, offering an introduction to supporting family carers who are looking after someone approaching the end of life. The use of participatory action research methods enabled the development of a programme that addresses support needs identified by bereaved carers and training needs identified by carer support workers.The finished programme includes all the materials necessary to run a training day for support workers and volunteers: facilitator’s notes, trainee workbook, slides, promotional poster and pre-course reading for trainees. Knowledge of issues involved in end-of-life and palliative care is not required, although some experience in delivering training is advisable.ConclusionThe programme evaluated well during development, but further research is required to examine the transfer of learning into the workplace.


Author(s):  
Claire Louise Needler ◽  
Jamie Fairbairn

Scots is one of three indigenous languages in Scotland, alongside English and Gaelic. In recent History, it was considered ‘slang', or ‘bad English'. Following legislative and policy changes, Scots is now recognized as a language and is recognized as a valuable part of the cultural heritage and lived experience of many who reside in Scotland. Further, in 2014, the Scots Language Award was introduced, and Scots is now taught in some schools. This chapter outlines a school-university research partnership that aimed to investigate the influence of teaching Scots on pupils' self-esteem and wider achievement. Using Participatory Action Research and creative arts to explore attitudes to Scots in school, the research highlighted the transformative power of home language (Scots) education.


2020 ◽  
Vol 28 (4) ◽  
pp. 379-385
Author(s):  
Jill Stavert

PurposeThe purpose of this study is to inform those who are supporting persons who are dying and are responsible for planning, commissioning or delivering palliative care about the need to support and maximise the decision-making ability and choices of persons with advanced dementia or severe frailty.Design/methodology/approachThis article will consider the legal and human rights principles applicable to Scotland, and indeed to other jurisdictions, which govern decisions about care and treatment of persons with and without capacity and the application of these principles to palliative care situations.FindingsIt is important that those involved in the care and support of the dying are fully aware of the need to support and maximise their decision-making ability concerning palliative care and treatment choices.Research limitations/implicationsIt is a well-established legal and human rights principle that the decisions of a person with capacity must be respected, including decisions about palliative care and treatment at the end of life. Moreover, recent developments in international human rights law reinforce the message that this principle applies equally to all. Applying this principle into persons with advanced dementia or severe frailty therefore requires skilled assessment and supported decision-making in order to optimise capacity and respect autonomy.Originality/valueThe discussion applies the United Nations Convention on the Rights of Persons with Disabilities approach concerning equality of rights enjoyment and supported decision-making to palliative care and treatment situations.


2021 ◽  
Vol 5 (2) ◽  
Author(s):  
Lesel Dawson ◽  
Jimmy Hay ◽  
Natasha Rosling

This collaborative project aimed to represent the embodied experience of grief in a fiction film by drawing on research, and on the personal and professional experience of all involved: academics; an artist; bereavement therapists and counsellors; and professional actors, cinematographers, sound engineers and other film crew. By representing grief in a more phenomenologically minded manner, the project sought to capture the lived experience of loss on screen while contributing meaningfully to the discourse on practice-as-research. Hay, Dawson and Rosling used a collaborative fiction film and participatory action research to investigate whether storying loss, and representing it through narrative, images and embodied movement, is therapeutic. Participatory action research was beneficial in facilitating changes in the co-researchers’ thinking, feeling and practice, and in enabling participants to inhabit multiple roles in a manner that expanded their disciplinary boundaries. However, while the project’s effect on some of the participants demonstrated the ways that creativity and meaning making can support adaptive grieving, it also revealed the risks of using participatory action research and fiction film to investigate highly emotive topics such as grief.


2022 ◽  
Vol 2 (1) ◽  
pp. 39-53
Author(s):  
Maggie O’Neill ◽  
Ramaswami Harindranath

The article explores the use and importance of taking a biographical approach to conducting participatory action research (PAR) with asylum seekers and refugees in order to: better understand lived experiences of exile and belonging; contribute to the important field of Biographical Sociology; provide a safe space for stories to be told; and in turn for these stories to feed in to policy and praxis. The authors’ combined work on the asylum-migration nexus, the politics of representation and participatory action research methodology (PAR) as ethno-mimesisi argues for the use of biography to contribute to cultural politics at the level of theory, experience and praxis, and is constitutive of critical theory in praxis. PAR research undertaken with Bosnian refugees in the East Midlands and Afghan refugees in London will be the focus around which our analysis develops. We develop a case for theory building based upon lived experience using biographical materials, both narrative and visual, as critical theory in practice towards a vision of social justice that challenges the dominant knowledge/power axis embedded in current governance and media policy relating to forced migration. The dominant power/knowledge axis related to forced migration is embedded in current (New Labour) governance and re-presented in some media texts as identified below. New Labour governance is symbolised in the competing discourses of a) strong centralised control and b) more open systems, network and partnership based governance (Newman, 2003: 17-23; Clarke, 2004; Lewis, 2000). Open systems are made up of partnerships and networks – “joined up government”, “that transcends the vertical, departmental structures of government itself” (Newman, 2003: 20). to develop or foster a consensual style of governing. Progressive governance is defined by Newman (2003:15) as involving a significant shift from governance through hierarchy and competition to governance through networks and partnerships with an emphasis upon inclusion. Progressive governance involves the production of techniques and strategies of responsibilisation of citizens operationalised through the development of networks, alliances, and partnerships, with a strong focus upon active citizenship. Thus, spreading responsibility for social control to non state agencies and “communities” (Garland, 2001). In relation to forced migration/asylum discourses around the exclusion of the “other” (involving criminalisation, detention and deportation) and the maintenance and control of borders (developing ever more tighter controls on entry and asylum applications) exist in tension with discourses that speak of human rights, responsibilities and possibilities for multi-cultural citizenship especially in the community cohesion literature. There is a conflict at the heart of New Labour’s approach to asylum policy linked to the “alterity” of the asylum seeker that promulgates hegemonic ideologies and discourses around rights to belonging and citizenship, perceived access to resources (redistribution) and misrecognition fostering suspicion of the “stranger”. Alongside discourses of fairness and rights to enter and seek refuge, there exist regressive discourses that water down the vitally important actual and symbolic 1951 UN convention, and foster a split between “bogus” and “genuine” refugees, making it extremely hard to seek asylum in the UK.


2018 ◽  
Vol 17 (2) ◽  
pp. 237-257 ◽  
Author(s):  
Kylah Forbes-Genade ◽  
Dewald van Niekerk

This article aims to crystallize the contributions of the Girls in Risk Reduction Leadership (GIRRL) Program in building resilient communities through the integration of adolescent girls into local level decision-making and action for reducing disaster risk. Disadvantaged adolescent girls carry a double burden derived from vulnerability associated with gender and age within the context of disaster risk. Girls often face greater danger than boys or adults and are perceived as powerless. Their needs go unheard and capacities ignored because of their exclusion from decision-making and social participation. Efforts to reduce risk must be inclusive of the needs of vulnerable populations. Despite global calls for the inclusion of women, children, and youth in risk reduction policy and planning, its application has been insufficient. The GIRRL Program, utilizing Participatory Action Research, helped to catalyze the capacities of girls through personal empowerment to drive the agenda for inclusive involvement of vulnerable populations to build community resilience. The paper will document the contributions of the GIRRL Program to improving community resilience through engaging decision-making, facilitating multi-sectoral understanding of vulnerability and risk, validating the importance of girls in risk reduction, creating capacity to manage girl-led processes, and strengthening risk reduction through local girl-led activities.


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