Development of a practical toolkit using participatory action research to address health inequalities through NGOs in the UK: Challenges and lessons learned

Abstract

This study aimed to develop a practical toolkit to support non-government organizations (NGOs) in tackling health inequalities in the UK and to highlight the challenges and lessons learned. A mixed qualitative methodology within an action research framework was conducted. Semi-structured questionnaires, focus group interviews and discussions with an expert reference group aimed to identify the important themes and produce the toolkit content. A practical guide of information materials for NGOs working on addressing health inequalities was subsequently developed and successfully piloted. The experience of using participatory action research revealed a number of lessons and challenges. The key challenges were lack of training and experience in conducting action research, costs and insufficient resources, slow and time-consuming process, lack of commitment from marginalized groups, and differences in emphasis of goals and vision among participants. The main lessons learned were importance of effective leadership and project management skills, importance of integrating researchers and the researched as equal partners, creation and nurturing of trust, importance of evaluating and piloting processes, importance of engaging with marginalized groups, and use of evidence base in decision making. The lessons and challenges enumerating herein are of value to researchers aiming to implement participatory action research in developing checklists, tools, practical guidance and frameworks, and they offer important areas to consider before starting such projects. In addition, this offers an insight into how the dynamics of participatory action research methodology evolved in the development of the toolkit. Future research and initiatives in this area should focus on ways to improve the toolkit and make it more relevant to a wider community, and methods for evaluating the impact of the toolkit on practice.

A systematic review of the experiences of minority language users in health and social care research

“…The disparities in health care use papers (Gaston-Johansson et al ., 2008; Hahm et al ., 2008; Coustasse et al ., 2010; Chirewa, 2012; Akhavan and Karlsen, 2013; Di Pietro and Illes, 2014; Wilk, Maltby and Phillips, 2018) were published between 2008 and 2018. These were a mixture of survey studies, cross-sectional designs, mixed methods studies, qualitative studies, and a systematic review.…”

“…In mixed-methods research, authors have noted that recognizing, respecting, and embracing the different cultures of the stakeholders and partner National Government Organisations (NGOs) is imperative for successful participatory action research Addressing diversity can foster inclusiveness and active participation of members. It is therefore important to reach out to as many NGO forum members as possible (Chirewa, 2012).…”

Coping Needs in Adolescents with Cancer: A Participatory Study

“…Studies integrating qualitative methods with participatory approaches often result in unique and helpful perspectives, while also requiring dedicated time for study preparation, data gathering, and concurrent analysis for all such studies. [31][32][33][34] Engaging adolescents undergoing treatment in group activities may involve additional time, flexibility, and coordination as participants' availability, health status, and interests may change. Online and mobile tools may help to engage adolescents while also adding complexity, from the need to review online confidentiality issues with families to considering limitations in internet access.…”