Pressure Ulcer Prevention at Home for People with Long-term Neurological Conditions, Carers and Personal Assistants: Synopsis - a Participatory, Qualitative study (PUP@Home1).

内容摘要

Many people with long-term neurological conditions (e.g. multiple sclerosis, spina bifida) live independently and manage complex health needs, including mobility and sensory limitations which mean they have a high risk of pressure ulcer development. Despite their high risk, appropriate pressure ulcer prevention support and resources are often lacking. To develop a Theory of Change pathway, which will underpin future development of a multicomponent intervention package supporting pressure ulcer risk identification and management, in partnership with people with long-term neurological conditions who self-manage care and live at home, their informal carers and personal assistants. We used a partnership approach based in the participatory research paradigm, with extensive input from those whose lives are the focus of the research. The study comprised four interlinked work packages: Work package 1 - Development of two co-operative inquiry groups Work package 2 - Semistructured interviews and/or participation via a smartphone app Work package 3 - Professional and strategic stakeholder engagement Work package 4 - Systems mapping and Theory of Change pathway development Iterative, qualitative data analysis was undertaken with emerging findings from each work package informing subsequent elements of the study. Overall, 74 participants contributed across the 4 work packages. This incorporated 31 service users, 8 carers, 9 personal assistants and 26 professional stakeholders. The findings indicate the complexities of pressure ulcer prevention for this population, who are often fulfilling multiple roles in society (i.e. in their families, communities, work) alongside onerous self-care routines. Systemic and professional barriers were found to hamper people's ability to self-care, support others and seek help. Areas of learning were highlighted around developing safe routines, third sector and peer support, learning about pressure ulcer prevention, navigating complex systems, adapting and reacting to change, perceptions of risk, risk negotiation and the role of non-clinical carers. By collaboratively reflecting on these findings with key stakeholders (service users, carers, personal assistants, professional/strategic partners), we were able to identify points in the system amenable to change. This underpinned the development of a Theory of Change for a multicomponent intervention incorporating awareness raising, routine guidance, escalation guidance and communication components (supported by preconditions, contextual requirements, long-term outcomes, impacts and explanatory rationale). We acknowledge that despite our best efforts (incorporating targeted National Health Service and third-sector recruitment), the ethnic diversity of our research was not as representative as we had intended. We have included work to address this lack of diversity in our next study, including dedicated community workshops to explore the cultural relevance and appropriateness of our proposed intervention. The study highlights the significant impact and complexities of managing pressure ulcer prevention activities at home, for people with long-term neurological conditions, carers and personal assistants. By understanding these complexities from different perspectives, we were able to develop a systems map and Theory of Change pathway informing future intervention development and evaluation. Funding has been awarded for Pressure Ulcer Prevention at Home 2 (PUP@home2): Self-management intervention development and user testing for people with long-term neurological conditions (NIHR163165) to support pressure ulcer prevention and self-care, based on our learning from this study. This synopsis presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number NIHR134029. We wanted to understand what people need to prevent pressure ulcers at home. We have worked with: People with long-term neurological conditions, for example, multiple sclerosis, spina bifida and spinal cord injury. Informal carers (e.g. family members). Personal assistants (a type of paid carer). Healthcare professionals. Pressure ulcers are patches of damaged skin and tissue. They can be caused by lying or sitting in one position for too long. Pressure ulcers can be a problem for people with conditions which make it harder to move. This is a participatory study, which means that people with relevant real-life experience are involved in every aspect of the research. Our research team includes service users, carers, personal assistants, health professionals and charity staff. The research included workshops, interviews and collecting information with a smartphone app. We used different techniques to collect and make sense of information, for example, creating maps (called systems maps) and using art and drama to bring stories to life. Seventy-four people took part (31 service users, 8 carers, 9 personal assistants and 26 professionals). We found that pressure ulcers, self-care and supporting others can have a huge impact on people’s well-being. People with long-term neurological conditions often manage complex health needs alongside busy lives. Complicated health and social care services can add to people’s stress. Sometimes professionals recommend things which do not fit in people’s day-to-day lives and a more flexible approach is needed. We identified what new pressure ulcer prevention resources might look like. New resources should: raise awareness among people who do not realise they are at risk of pressure ulcers help people to developing safe, flexible self-care routines help people to understand when and how to seek professional help improve communication between service users and the people who support them.