Table 4 Practical recommendations to initiate effective PPI approaches within care home research
Overarching themes | Subthemes | Practical recommendations |
|---|---|---|
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 | Amplified voice Experts by experience Achieving meaningful impact | Residents should be viewed as ‘experts by experience’ and supported to make practical suggestions to implement changes that are appropriately aligned to their needs (e.g. co-designing affirmative titles such as ‘Sages’ or ‘VOICES’ to amplify their involvement in the project) Researchers should seek opportunities for residents and other stakeholders to aid dissemination of the findings within non-academic settings (e.g. presenting to care home managers within multi-disciplinary meetings) |
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 | Spectrum of involvement Safe communicative space | Researchers should undertake stakeholder mapping to identify who should be included and provide opportunities across the spectrum of involvement (e.g. co-produce and monitor involvement strategies to ensure a diverse proportion of stakeholders are involved) Research teams should ensure inclusive environments, cultures and practices which recognises that stakeholders will have individual communication needs (e.g. providing materials in large print and audio formats) Researchers should recognise that care home residents are not a heterogenous group but have diverse backgrounds and opinions which provide invaluable perspectives which positively impacts research (e.g. identify the skills, expertise and experiences of the stakeholders from the beginning of the project) |
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 | Balancing power dynamics Navigating the research topic Appropriate recruitment process | Researchers should recognise and address potential power imbalances, such as hosting separate PPI meetings with layperson briefings, so stakeholders remain integrated with the research development Stakeholders should be provided with opportunities to engage in research following tailored recruitment strategies (e.g. advertisements within care homes, partnering with representative organisations) |
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 | Optimising accessibility Tailoring communication methods | Stakeholders should be provided with alternative dialogue pathways (virtual meetings, email, telephone, or letters) to engage with the research team, and adapted as appropriate Researchers should ensure that the communication and support needs of stakeholders are assessed and addressed (e.g. develop tailored communication strategies using tools such as the Consent Support Tool and use of reflection throughout the project) |
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 | Additional funding Recognising training needs | Funders of health and care research should recognise that additional resources are needed to undertake effective PPI in care home research and ensure appropriate funding is available to support relationship-building Researchers should undertake training to develop appropriate research-specific skills (e.g. data collection and interviewing people with cognitive impairment)Research organisations should provide training sessions for research teams about how to confidently engage with people with physical impairments and additional needs (e.g. communication and role play workshops) |