What is Participatory Research? Why
					do it?

Higginbottom, Gina; Liamputtong, Pranee

doi:10.4135/9781473919945.n1

Cited by 18 publications

(27 citation statements)

References 42 publications

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“…In this way, the workshop participants provided data and assisted with interpretation and organization of the data, and provided additional data to refine findings. This process is akin to a grounded theory approach to data collection and analysis with an emphasis on the co‐construction of data and findings by the study participants and the research team …”

Section: Methodsmentioning

confidence: 99%

“…This process is akin to a grounded theory approach to data collection and analysis with an emphasis on the co-construction of data and findings by the study participants and the research team. 6,7 Following the meeting, the study team developed a model of seizure burden based on the themes and the discussions that occurred at the meeting. All workshop participants were sent the results.…”

Section: Methodsmentioning

confidence: 99%

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Seizure burden in severe early‐life epilepsy: Perspectives from parents

et al. 2019

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Objectives Seizure burden is typically measured by seizure frequency yet it entails more than seizure counts, especially for people with severe epilepsies and their caregivers. We aimed to characterize the multi‐faceted nature of seizure burden in young people and their parents who are living with severe early‐life epilepsies. Methods A one‐day workshop and a series of teleconferences were held with parents of children with severe, refractory epilepsy of early‐life origin and providers for children with epilepsy. The workshop sessions were structured as focus groups and aimed to identify components of seizure burden and their impact from the perspective of parents and providers. Data were gathered, organized, and refined during the workshop using an iterative 4‐step process that drew upon grounded theory. Results Three primary components of seizure burden were identified: frequency, severity, and unpredictability, which was as important if not more important at times than frequency and severity. Caregivers noted that the impacts of seizures were experienced as acute‐immediate consequences, longer‐term consequences, and as chronic effects that develop and evolve over time. The severity of the child's neurological and medical status as well as where in the disease journey a family was represented additional contextual factors that influenced the experience of seizure burden. Significance Patient‐reported and patient‐centered outcomes are increasingly incorporated into the evaluation of treatment effectiveness. Without understanding how the disease creates burden for the patient (or family), it is difficult to know how to assess the impact of treatment. Our preliminary findings indicate seizure burden is a complex construct and unpredictability can be as important as frequency and severity.

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Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Seizure burden in severe early‐life epilepsy: Perspectives from parents

et al. 2019

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“…The current study was carried out in the province of Quebec, Canada. As recommended by the developers of the IM protocol [ 33 ], a qualitative participatory approach was used to construct and develop the intervention [ 39 ]. This involved collaboration between researchers and community pharmacists in order to share knowledge and develop actions that take into account the perspectives of different actors, and it took the form of a pharmacists’ committee that was involved in each step of the process.…”

Section: Methodsmentioning

confidence: 99%

The Development of a Community Pharmacy-Based Intervention to Optimize Patients’ Use of and Experience with Antidepressants: A Step-by-Step Demonstration of the Intervention Mapping Process

Santina

Lauzier

Gagnon³

et al. 2018

Pharmacy

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Objective: To describe the development of a community pharmacy-based intervention aimed at optimizing experience and use of antidepressants (ADs) for patients with mood and anxiety disorders. Methods: Intervention Mapping (IM) was used for conducting needs assessment, formulating intervention objectives, selecting change methods and practical applications, designing the intervention, and planning intervention implementation. IM is based on a qualitative participatory approach and each step of the intervention development process was conducted through consultations with a pharmacists’ committee. Results: A needs assessment was informed by qualitative and quantitative studies conducted with leaders, pharmacists, and patients. Intervention objectives and change methods were selected to target factors influencing patients’ experience with and use of ADs. The intervention includes four brief consultations between the pharmacist and the patient: (1) provision of information (first AD claim); (2) management of side effects (15 days after first claim); (3) monitoring treatment efficacy (30-day renewal); (4) assessment of treatment persistence (2-month renewal, repeated every 6 months). A detailed implementation plan was also developed. Conclusion: IM provided a systematic and rigorous approach to the development of an intervention directly tied to empirical data on patients’ and pharmacists’ experiences and recommendations. The thorough description of this intervention may facilitate the development of new pharmacy-based interventions or the adaptation of this intervention to other illnesses and settings.

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“…Central to participatory methods is creating an empowering environment that places participants at the centre of the research and the facilitators/researchers as learners and enablers [ 28 , 29 ]. It requires the establishment of credible and trusting relationships between researchers, individuals, groups and communities [ 30 ]. We used workshop methodology (see data collection section for details of the workshop) as it brings people together – as in this case, a wide range of health systems stakeholders – to learn, acquire new knowledge, perform creative problem-solving or innovate in relation to a specific issue, in this case, the attraction, retention and support of midwives.…”

Section: Methodsmentioning

confidence: 99%

Developing strategies to attract, retain and support midwives in rural fragile settings: participatory workshops with health system stakeholders in Ituri Province, Democratic Republic of Congo

Baba¹,

Martineau

Theobald

et al. 2020

Health Res Policy Sys

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Background Midwifery plays a vital role in the quality of care as well as rapid and sustained reductions in maternal and newborn mortality. Like most other sub-Saharan African countries, the Democratic Republic of Congo experiences shortages and inequitable distribution of health workers, particularly in rural areas and fragile settings. The aim of this study was to identify strategies that can help to attract, support and retain midwives in the fragile and rural Ituri province. Methods A qualitative participatory research design, through a workshop methodology, was used in this study. Participatory workshops were held in Bunia, Aru and Adja health districts in Ituri Province with provincial, district and facility managers, midwives and nurses, and non-governmental organisation, church medical coordination and nursing school representatives. In these workshops, data on the availability and distribution of midwives as well as their experiences in providing midwifery services were presented and discussed, followed by the development of strategies to attract, retain and support midwives. The workshops were digitally recorded, transcribed and thematically analysed using NVivo 12. Results The study revealed that participants acknowledged that most of the policies in relation to rural attraction and retention of health workers were not implemented, whilst a few have been partially put in place. Key strategies embedded in the realities of the rural fragile Ituri province were proposed, including organising midwifery training in nursing schools located in rural areas; recruiting students from rural areas; encouraging communities to use health services and thus generate more income; lobbying non-governmental organisations and churches to support the improvement of midwives’ living and working conditions; and integrating traditional birth attendants in health facilities. Contextual solutions were proposed to overcome challenges. Conclusion Midwives are key skilled birth attendants managing maternal and newborn healthcare in rural areas. Ensuring their availability through effective attraction and retention strategies is essential in fragile and rural settings. This participatory approach through a workshop methodology that engages different stakeholders and builds on available data, can promote learning health systems and develop pragmatic strategies for the attraction and retention of health workers in fragile remote and rural settings.

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What is Participatory Research? Why do it?

Cited by 18 publications

References 42 publications

Seizure burden in severe early‐life epilepsy: Perspectives from parents

Seizure burden in severe early‐life epilepsy: Perspectives from parents

The Development of a Community Pharmacy-Based Intervention to Optimize Patients’ Use of and Experience with Antidepressants: A Step-by-Step Demonstration of the Intervention Mapping Process

Developing strategies to attract, retain and support midwives in rural fragile settings: participatory workshops with health system stakeholders in Ituri Province, Democratic Republic of Congo

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