Engaging active citizen participation in the co creation of an educational and information campaign to support older people to be empowered against abuse: Key learnings for integrative care
Introduction Elder abuse represents a threat to the physical, social and mental health of older people. The main forms of abuse are physical, psychological, discriminatory, sexual, financial and neglect or acts of omission. Despite increasing recognition of the epidemic of elder abuse there remains a paucity of robust evidence supporting intervention. Furthermore, where a systems level response to elder abuse is in place, there is a need for greater participation of older people in the co design, implementation and evaluation of interventions. Elder abuse is a complex phenomenon often involving multiple forms of abuse occurring simultaneously and requiring intervention from the perspectives of health, social and legal policy and service provision. It is generally agreed that elder financial abuse is under reported and is particularly difficult to recognise or detect. This form of elder abuse is often concurrent with and indicative of other types of abuse particularly discriminatory and/or psychological abuse. This paper describes the process of engaging public peer representatives as co creators of an intervention to empower older people to protect themselves from financial abuse. The discussion of this grounded up and people centred approach to intervention development highlights the key learning for activating citizens/patients and supporting their participation in the co production of integrated health and social care services. Description of practice change With funding from the Irish Health Service Executive, the National Centre for the Protection of Older People (NCPOP) at UCD undertook to develop a campaign to support older people to be empowered against financial abuse. On foot of this initiative, The Older People's Empowerment Network (OPEN) was established in spring 2013. OPEN is composed of peer representatives of older people as well as members of the NCPOP research team. During the summer and autumn of 2013, OPEN held regular meetings and consultations with experts in the fields of elder financial and social protection. These meetings helped the group understand the key issues relevant to elder financial protection in Ireland. The group was also informed by current research evidence on elder abuse prevention and intervention. Finally, a panel of experts in the areas of legal, financial and social protection was established to provide advice on the design and content of the campaign. Findings This work culminated in Keep Control; a multi media educational and information campaign developed by older people for older people. The three pillars of the campaign are: a website, a DVD and a resource or information pack. Through these pillars, information and resources are provided within five critical areas for financial self protection: making a Will, implementing enduring powers of attorney, opening joint accounts and authorising signatures, making decisions at critical life events and protecting oneself on the doorstep. Furthermore, information about the forthcoming assisted decision making (capacity) legislation in Ireland is provided. This information focuses on the potential implications of the legislation for the financial protection of older people who have reduced decision making capacity. Highlights The transferable learning, identified from the development process of the Keep Control campaign, include: engaging active participation from relevant citizens/patients from the earliest point possible in the process of intervention development; establishing a project steering group with a critical mass of citizen/patient representatives and which is organised in a non hierarchical manner; having a defined objective with designated deliverable outcomes which are discussed and agreed upon by the steering group from the outset of project development; ensuring there is adequate knowledge exchange between steering group members and ensuring that professional knowledge is transferred and disseminated throughout the steering group in an accessible way and finally; activating the citizen/patient steering group representatives as the 'public faces' of the initiative for the purposes of implementation and dissemination. These key learning points are considered critical to engaging active citizen/patient participation in the co creation of integrated health and social care services. Conclusion The participatory development process which informed the co creation of the Keep Control campaign has provided the model for a further integrated care initiative in Ireland which engaged family carers and care recipients in the co design of a palliative care learning resource. A next phase for the project is to transfer this model for citizen engagement in the co design of integrated care to other areas of health and social care. Examples of potential areas for application of this model include other forms of elder and/or vulnerable adult abuse as well as clinical and healthcare practice settings. Furthermore, the methodological challenges of evaluating the efficacy of citizen/patient involvement and measuring the public and user experience of the campaign present exciting areas for further innovative exploration.