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Sustaining patient and public involvement in research: A case study of a research centre.

The literature on patient and public involvement (PPI) in research covers a wide range of topics. However, one area of investigation that appears under developed is the sustainability and impact of PPI beyond involvement in time-limited research projects. This paper presents a case study of PPI development in one primary care research centre in England, and its approach to making this sustainable using documentary sources and material from a formal evaluation. We provide narrative accounts of the set-up, operation and main processes of PPI, and its perceived impact. PPI requires a long-term perspective with participation and trust growing over time, and both users and researchers learning what approaches work best. PPI is a complex interplay of clarity of purpose, defined roles and relationships, organised support (paid PPI staff) and a well-funded infrastructure. ‘Soft systems’ are equally important such as flexible and informal approaches to meetings, adapting timetables and environments to meet the needs of lay members and to create spaces for relationships to develop between researchers and lay members that are based on mutual trust and respect. This case study highlights that the right combination of ethos, flexible working practices, leadership, and secure funding goes a long way to embedding PPI beyond ad hoc involvement. This allows PPI in research to be integrated in the infrastructure and sustainable.

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Open Access
Measurement features of a long-term care quality of life (LTC-QoL) assessment scale

The issue of life quality for older people admitted for long-term care is of concern to those keen to provide services that support an acceptable quality of life. This study investigates measurement characteristics of the long-term care quality of life (LTC-QoL) assessment scale developed to address a gap in quality in life assessment in such contexts, i.e. an easy to use single scale generating summary information on the life quality experienced by all older adults in care, indicating aspects requiring attention from direct care personnel and providing management information on individual and care unit outcomes in supporting residents' experiences of life quality. Analysis of repeated LTC-QoL data for 62 long-term residents in an Australian aged care facility establishes the instrument as having good reliability and validity. Exploratory factor analysis of nine items revealed high internal consistency, good test–retest reliability, and validity across age, gender, and cognitive capacity of participants. Findings establish that the LTC-QoL has adequate reliability and dimensionality. Content validity and management utility were verified by experts using and refining the scale over 7 years in long-term care contexts, resulting in an easy to use and reliable assessment tool for long-term care recipients.

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