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.

AbstractExisting research suggests that care pathways can improve the quality, organization, and consistency of care. However, little is known about the current scope and implementation of care pathways across the world. In collaboration with the European Pathway Association, we designed and implemented a survey on the use of care pathways. The survey could not be representative of national experience with care pathways, given that they are most often developed locally, but rather aimed to provide insight into differences and commonalities. We collected 163 responses (25% response rate) from 39 countries across the world. The survey uncovered variability in the use of evidence-based guidelines, a continued reliance on giving patients information rather than investing in self-management training, suboptimal involvement of patients in the development of, and training on, care pathways, and reported challenges of evaluating the effectiveness of care pathways against a range of indicators. More work is needed...

AbstractThis paper presents findings from interviews with social care service development managers and brokers in three local authorities. It follows an earlier study exploring choice and flexibility in home care services for older people using council-managed personal budgets. That study found that local authorities were limiting the number of providers on framework agreements for home care services so that there were sufficient to encourage competition but not so many that providers risked having insufficient business to remain financially viable. It also found that communication issues were affecting the proper functioning of brokerage systems. The current study therefore revisited the same three local authorities to investigate changes in framework agreements and developments in brokerage systems. The findings showed little change in the number of providers on framework agreements and remaining communication challenges for brokers. However, lessons had been learned from unforeseen consequences of fram...

AbstractEnglish adult social care commissioners are expected to make ‘evidence based’ decisions on how best to invest public sector funding. This study explores the types of evidence that commissioners use in relation to prevention services for older people and the other factors that influence their investment decisions. A study of local authority Directors of Adult Social Services (DASSs) was used to identify three local prevention interventions. Semi-structured interviews with leads for these interventions explored the evidence and other factors that influenced the investment process. Commissioners drew on a variety of published evidence, in particular that deriving from central government and its regional representative bodies, and third sector organizations with specialist knowledge. Local evidence was also generated through the undertaking of pilots and gathering of performance data. Alongside these ‘rational’ decision-making processes were strong political, personal, and relational dimensions relate...

The Care Act 2014 has received Royal Assent and is now law. Given the context and the constraints that care providers face on a daily basis I wonder the extent to which the progress of the legislat...

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.

This paper explains and demonstrates the early application of collaborative stretching: a new and practical technique for enhancing the quality of lives of people in care – particularly those who have severe cognitive impairments. An introduction explains severe cognitive impairment and the notion of quality of life. This is followed by an explanation of the nature of, theory behind, and the key steps of collaborative stretching. An illustrative vignette is then presented to demonstrate its application, utility, and value in one care setting. The paper concludes with a discussion around advancing a research agenda for this technique, and its potential implications for care service managers.

With an ageing population and limited resources the challenge for policy makers and practitioners is how best to provide for the care and support needs of older people. This article draws on findings from two studies, a scoping study of the personalisation of care services and another which aimed to generate evidence about the potential use of family-based support schemes (Shared Lives, SL) for certain groups of older people. Forty-three schemes participated in a survey to gather information about services provided and the extent to which this included older people and their carers, and six staffs were interviewed across two schemes about issues for expanding provision for older people in their local areas. It was evident that SL schemes were already supporting a number of older people and there was support for expansion from both schemes and local authorities. Adequate resources, awareness raising, management commitment, and a pool of suitable carers would be needed to support any expansion effort. There is also still a need for SL to be more widely known and understood by care managers if it is to be considered part of mainstream provision for older people.

AbstractThis paper investigates the cost-effectiveness of a pilot social care service for military veterans, a group relatively ill-served by traditional forms of social and health care. The service involved caseworkers signposting veterans, experiencing multiple difficulties, to sources of advice designed to assist with issues such as employment and training, education, debt, legal problems, and housing. Routinely generated data were collected on 202 veterans, concerning their characteristics, types of problem, and resources identified, and on a sub-set (n = 21) of these, regarding their outcomes in terms of well-being, measured by routine administration of the General Health Questionnaire. Costs, in terms of caseworkers' time commitments, were modelled across this sample of veterans. The additional costs as against the additional effects of the service, against usual care (the standard primary care response to this population), were modelled in terms of the Incremental Cost Effectiveness Ratio. There wa...