Table 3 Definitions of overarching themes and associated examples
Overarching themes | Example |
|---|---|
Valuing stakeholders’ perspectives There must be a clear recognition that the lived experiences and personal viewpoints of PPI stakeholders are pivotal to the research design and outcomes, including the dissemination and impact to clinical practice | “The PPI team were instrumental in helping the research team to secure additional funding, in helping with our funding monitoring committee and in adapting our recruitment methods. The PPI team suggested that care home managers were best placed to understand their residents’ wishes in terms of participating in this research, which resulted in a 3% increase in recruitment per care home.” [40] |
Inclusivity and transparency Creating a research environment of inclusivity and transparency enables diverse stakeholder groups to be involved in research; via a spectrum of involvement which provides a safe communicative space for PPI stakeholders to build a rapport with the research team | “Senior management was willing for staff to be involved in all aspects of the research, including meetings, completing questionnaires and working alongside researchers to develop the grant application.” [35] |
Multi-faceted research context An effective PPI approach considers the complexity of the research topic in relation to the existing knowledge of PPI stakeholders, balances the power dynamic hierarchies and encourages a representative recruitment approach | “We conclude that striving for the collective involvement of clients in residential care organisations is a complex and delicate process. It is not taking place in a vacuum, but is embedded in a socio-cultural, political context, related to power asymmetries.” [51] |
Flexibility and adaptability An iterative and flexible approach to the methods of involvement, accommodates the diverse needs of PPI stakeholders and adapts to the preferred mode of communication and optimises accessibility | “It was important to consider the physical, social, and temporal environment to allow people with a range of physical and sensory constraints to communicate effectively and to enable discourse and meaning to develop. Older people living in residential care met with the members of the research team but without care staff present.” [27] |
Resources and wider support The ability to tailor training to PPI stakeholders’ needs and offer additional financial aid, enhances the scale of collaboration, and impacts the research design | “A financial budget was available for paying co-researchers an allowance for their participation, but such an allowance was tied to national restrictions. These co-researchers are only allowed to receive 1500 euros per year for their volunteering work, otherwise the reimbursement will be deducted from their benefit resulting in extra bureaucracy.” [43] |