scholarly journals Supporting family carers in home-based end-of-life care: using participatory action research to develop a training programme for support workers and volunteers

2017 ◽  
Vol 9 (1) ◽  
pp. e4-e4 ◽  
Author(s):  
Glenys Caswell ◽  
Beth Hardy ◽  
Gail Ewing ◽  
Sheila Kennedy ◽  
Jane Seymour
Keyword(s):  
Action Research ◽  
Participatory Action Research ◽  
End Of Life ◽  
Third Sector ◽  
Training Programme ◽  
Family Carers ◽  
Participatory Action ◽  
Health And Social Care ◽  
Carer Support ◽  
Support Family

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.

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

2017 ◽  
Vol 46 (Suppl_3) ◽  
pp. iii1-iii12
Author(s):  
Carla Reigada ◽  
Attracta Lafferty ◽  
Áine Teahan ◽  
Amanda Phelan ◽  
Liam O’Sullivan ◽  
...  
Keyword(s):  
Action Research ◽  
Participatory Action Research ◽  
Research Network ◽  
Family Carers ◽  
Participatory Action ◽  
People With Dementia

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
Keyword(s):  
Decision Making ◽  
Human Rights ◽  
Action Research ◽  
Participatory Action Research ◽  
Lived Experience ◽  
Participatory Action ◽  
Persons With Disabilities ◽  
Care And Support ◽  
Health And Social Care ◽  
The Relationship

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.

scholarly journals Evaluating a novel Integrated Community of Care (ICoC) for patients from an urbanised low-income community in Singapore using the participatory action research (PAR) methodology: a study protocol

BMJ Open ◽  
2017 ◽  
Vol 7 (10) ◽  
pp. e017839 ◽  
Author(s):  
Lian Leng Low ◽  
Adlina Maulod ◽  
Kheng Hock Lee
Keyword(s):  
Mixed Methods ◽  
Action Research ◽  
High Risk ◽  
Participatory Action Research ◽  
Low Income ◽  
Acute Hospital ◽  
Participatory Action ◽  
Health And Social Care ◽  
The Impact ◽  
Hospital Use

IntroductionPoorer health outcomes and disproportionate healthcare use in socioeconomically disadvantaged patients is well established. However, there is sparse literature on effective integrated care interventions that specifically target these high-risk individuals. The Integrated Community of Care (ICoC) is a novel care model that integrates hospital-based transitional care with health and social care in the community for high-risk individuals living in socially deprived communities. This study aims to evaluate the effectiveness of the ICoC in reducing acute hospital use and investigate the implementation process and its effects on clinical outcomes using a mixed-methods participatory action research (PAR) approach.Methods and analysisThis is a single-centre prospective, controlled, observational study performed in the SingHealth Regional Health System. A total of 250 eligible patients from an urbanised low-income community in Singapore will be enrolled during their index hospitalisation. Our PAR model combines two research components: quantitative and qualitative, at different phases of the intervention. Outcomes of acute hospital use and health-related quality of life are compared with controls, at 30 days and 1 year. The qualitative study aims at developing a more context-specific social ecological model of health behaviour. This model will identify how influences within one’s social environment: individual, interpersonal, organisational, community and policy factors affect people’s experiences and behaviours during care transitions from hospital to home. Knowledge on the operational aspects of ICoC will enrich our evidence-based strategies to understand the impact of the ICoC. The blending of qualitative and quantitative mixed methods recognises the dynamic implementation processes as well as the complex and evolving needs of community stakeholders in shaping outcomes.Ethics and disseminationEthics approval was granted by the SingHealth Centralised Institutional Review Board (CIRB 2015/2277). The findings from this study will be disseminated by publications in peer-reviewed journals, scientific meetings and presentations to government policy-makers.Trial registration numberNCT02678273

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