132Key Considerations in the Development of a Participatory Action Research Network of Family Carers of People with Dementia

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.

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Repoliticising Participatory/Action Research: From Action Research to Activism: some considerations on the 7th Action Research Network of Americas Conference

International Journal of Action Research ◽

10.3224/ijar.v16i3.06 ◽

2021 ◽

Vol 16 (3-2020) ◽

pp. 267-278

Author(s):

de Castro Pitano Sandro ◽

Rosa Elena Noal ◽

Cheron Zanini Moretti

Keyword(s):

United States ◽

Action Research ◽

Social Responsibility ◽

Participatory Action Research ◽

Participatory Research ◽

Research Network ◽

Traditional Practices ◽

Participatory Action ◽

The North ◽

The Social

The seventh conference of the Action Research Network of the Americas (ARNA) took place in Montreal, Canada, from the 26th to 28th of June, in 2019. Having as title “Repoliticising Participatory/Action Research: From Action Research to Activism”, the event gathered people from different areas of practice coming mostly from the North American countries: Canada, United States and Mexico. The discussion presented here is based on notes made by the authors in the course of the conference, in which 40 words/keywords were identified, serving as a base to debate the validity of the principles of participatory research and action research in its repoliticisation and activism. Thus, we presented a systematisation of some key themes of the conference, among them, the commitment with the rupture: in relation to the traditional practices of research, the role and the social responsibility of the universities and the transforming character of participation, with emphasis in the effort for its repoliticisation and activism.

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Cornell Participatory Action Research Network

The SAGE Encyclopedia of Action Research ◽

10.4135/9781446294406.n86 ◽

2014 ◽

Keyword(s):

Action Research ◽

Participatory Action Research ◽

Research Network ◽

Participatory Action

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Living With Dementia: Flipping Stigma on Its Ear

Innovation in Aging ◽

10.1093/geroni/igaa057.135 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 41-42

Author(s):

Deborah O'Connor ◽

Alison Phinney ◽

Jim Mann ◽

Habib Chaudhury ◽

Kishore Seetharaman ◽

...

Keyword(s):

Action Research ◽

Participatory Action Research ◽

Social Exclusion ◽

Social Citizenship ◽

Participatory Action ◽

Significant Growth ◽

Academic Literature ◽

Action Group ◽

People With Dementia ◽

Whole Person

Abstract The language of social citizenship has emerged in the academic literature as one way of shifting the discourse to counter persistent problems of stigma and social exclusion for people with dementia. What this means and how it is experienced however from the perspective of those with dementia remains unclear. As part of a larger Participatory Action Research (PAR) study, an Action group of people with dementia began meeting in June 2019. The group now consists of ten members and meets monthly. The first task of the Action group was to assist in developing a more refined and practical understanding of the construct of social citizenship. Facilitated discussions were guided by the following questions: What are experiences of social citizenship by people with dementia? What kinds of practices and relationships promote the capacity of people with dementia to experience themselves as social citizens? Emerging findings indicate that the stigma is readily identified as a dominant aspect of the experience of living with dementia which needs to be ‘flipped on its ears’. Strategies for countering stigma include recognizing how language can both facilitate and block change, acknowledging dementia as a time of both loss and significant growth, remaining visible as a whole person – equal and also different - and maintaining active participation in one’s own life. These themes tie directly to the components identified in the academic literature of citizenship. However, members of the Action group were clear that the language of social citizenship is neither empowering nor strategic.

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Public led online trials and participatory action research: Why do we need them?

European Journal for Person Centered Healthcare ◽

10.5750/ejpch.v4i2.1095 ◽

2016 ◽

Vol 4 (2) ◽

pp. 340 ◽

Cited By ~ 2

Author(s):

Amy Price

Keyword(s):

Clinical Trials ◽

Action Research ◽

Participatory Action Research ◽

Public Involvement ◽

Research Network ◽

Participatory Action ◽

Participant Satisfaction ◽

Research Literacy ◽

Patient Values ◽

Research Decision

Aim: The aim of this paper is to propose a participatory action research network where the public are equipped with the tools to become informed and responsible shared research decision-makers who help prioritize, initiate, design, organize and participate in health research through online randomized controlled trials about health and wellbeing.Concept Summary: Public involvement in clinical trials tends to focus on patient values and experience rather than increasing research literacy or fostering active collaboration and informed shared decision-making amongst citizens. Although literature searches reveal bespoke platforms and pockets of participant collaboration in online trials there are no known international research initiatives exploring this perspective through participatory action research. The potential and the limitations of pragmatic "Does it Work?" clinical trials for engaging citizen collaborators is discussed in addition to the capacity of public led online clinical trials to increase research literacy and participant satisfaction.

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