Catherine Powell, Lubena Mirza, Mohammed Akhlak Rauf, Justine Tomlinson, Zoe Edwards, Rozeena Khan, Jan Speechley, John L O'Dwyer, Catherine Quinn, Beth Fylan
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引用次数: 0
Abstract
Background: With appropriate support people living with mild-moderate dementia and family carers can self-manage their medicines. However, existing interventions often focus on enhancing adherence to a medication regimen rather than supporting people with other areas, such as monitoring side effects or checking for errors. A person-centred psychosocial intervention, empowering community-dwelling people living with mild-moderate dementia and family carers to self-manage their medicines, is warranted. The method of developing such an intervention needs to reflect this person-centred approach.
Objective: To co-design a psychosocial intervention to support medicines self-management for community-based people living with mild-moderate dementia and family carers.
Design: An Experience-Based-Co-Design (EBCD) approach was applied to develop the 'Enhancing medicines self-management in community-dwelling people living with dementia and family carers (MAGNET)' intervention. The EBCD method involves intervention design through service users identifying problems they face and co-designing solutions with service providers. A film about experiences of medicines self-management was shown to people with dementia, family carers, and professionals; followed by a priority setting workshop, six intervention co-design workshops and a celebration event. Feedback was collated. A complex psychosocial healthcare intervention was developed.
Setting and stakeholders: Community-dwelling people living with dementia and family carers, dementia care professionals, an expert facilitator, members of the MAGNET patient public involvement (PPI) group and members of the MAGNET research team.
Results: The resulting co-designed intervention focused on five key priority areas: 'how can living with dementia affect how you organise medicines', 'knowing my medicines', 'who can help', 'making it right for you' and 'planning for the future'. A guide, video and reminder postcard for the person, and training and an implementation guide for professionals were created, alongside a logic model. Stakeholders reported positive experiences in developing the intervention, including giving back to the community, and the opportunity learn from and gain support from others.
Conclusion: The process of co-designing the intervention had an immediate important social impact. Further work is underway to feasibility test the intervention.
Patient or public contribution: Patient public involvement members have had a key role in co-designing the intervention, participating in and co-leading workshops and reviewing iterations.
期刊介绍:
Health Expectations promotes critical thinking and informed debate about all aspects of patient and public involvement and engagement (PPIE) in health and social care, health policy and health services research including:
• Person-centred care and quality improvement
• Patients'' participation in decisions about disease prevention and management
• Public perceptions of health services
• Citizen involvement in health care policy making and priority-setting
• Methods for monitoring and evaluating participation
• Empowerment and consumerism
• Patients'' role in safety and quality
• Patient and public role in health services research
• Co-production (researchers working with patients and the public) of research, health care and policy
Health Expectations is a quarterly, peer-reviewed journal publishing original research, review articles and critical commentaries. It includes papers which clarify concepts, develop theories, and critically analyse and evaluate specific policies and practices. The Journal provides an inter-disciplinary and international forum in which researchers (including PPIE researchers) from a range of backgrounds and expertise can present their work to other researchers, policy-makers, health care professionals, managers, patients and consumer advocates.