How do quantitative studies involving people with dementia report experiences of standardised data collection? A narrative synthesis of NIHR published studies.

BACKGROUND: People with dementia are routinely included as research participants in trials and other quantitative studies in which they are invited to respond to standardised measures. This paper reviews the reporting of standardised data collection from people with dementia in reports published in the National Institute for Health and Care Research (NIHR) Journals Library. The aim was to understand how the administration of standardised, self-report measures with people with dementia is reported in NIHR monographs and what could be learnt from this about the feasibility and acceptability of data collection approaches for future studies. METHODS: This was a systematic review with narrative synthesis. Broad search terms (Dementia OR Alzheimer*) were used to search the NIHR Journals Library website in December 2021. All studies that used (or intended to use) standardised measures to collect research data directly from people with dementia were eligible for inclusion. Information was extracted (where reported) on the process of data collection, dementia severity, levels of missing data and the experiences and reflections of those involved. RESULTS: Searches returned 42 records, from which 17 reports were assessed as eligible for inclusion, containing 22 studies. Response rates from participants with dementia in these studies varied considerably and appeared to be related to dementia severity and place of residence. Little information was reported on the process of data collection or the reasons for missing data, and most studies did not report the experiences of participants or those administering the measures. However, there was an indication from two studies that standardised data collection could provoke emotional distress in some participants with dementia. CONCLUSIONS: Through this review we identified both variation in levels of missing data and gaps in reporting which make it difficult to ascertain the reasons for this variation. We also identified potential risks to the well-being of participants with dementia which may be associated with the content of standardised measures and the context of data collection. Open reporting of and reflection upon data collection processes and the experiences of people involved is essential to ensure both the success of future data collection and the wellbeing of study participants. TRIAL REGISTRATION: Registered with Research on Research https://ror-hub.org/study/2905/ .

Long-term impact of the COVID-19 pandemic on the quality of life of people with dementia and their family carers.

INTRODUCTION: Few studies have longitudinally mapped quality of life (QoL) trajectories of newly diagnosed people with dementia and their carers, particularly during coronavirus disease-2019 (COVID-19). METHODS: In a UK cohort study, 261 newly diagnosed people with dementia and 206 family carers were assessed prior to the pandemic (July 2019-March 2020), followed up after the first lockdown (July-October 2020) and then again a year and 2 years later. Latent growth curve modelling examined the level and change of QoL over the four time-points using dementia-specific QoL measures (DEMQOL and C-DEMQOL). RESULTS: Despite variations in individual change scores, our results suggest that generally people with dementia maintained their QoL during the pandemic and experienced some increase towards the end of the period. This contrasted with carers who reported a general deterioration in their QoL over the same period. 'Confidence in future' and 'Feeling supported' were the only carer QoL subscales to show some recovery post-pandemic. DISCUSSION: It is positive that even during a period of global disruption, decline in QoL is not inevitable following the onset of dementia. However, it is of concern that carer QoL declined during this same period even after COVID-19 restrictions had been lifted. Carers play an invaluable role in the lives of people with dementia and wider society, and our findings suggest that, post-pandemic, they may require greater support to maintain their QoL.

Using digital technologies to facilitate social inclusion during the COVID-19 pandemic: Experiences of co-resident and non-co-resident family carers of people with dementia from DETERMIND-C19.

BACKGROUND: The COVID-19 pandemic triggered rapid and unprecedented changes in the use of digital technologies to support people's social inclusion. We examined whether and how co-resident and non-co-resident family carers of people with dementia engaged with digital technologies during this period. METHODS: Throughout November 2020-February 2021, we interviewed 42 family carers of people with dementia from our DETERMIND-C19 cohort. Preliminary analysis was conducted through Framework analysis, followed by an inductive thematic analysis. FINDINGS: Digital technologies served as a Facilitator for social inclusion by enabling carers to counter the effects of the differing restrictions imposed on them so they could remain socially connected and form a sense of solidarity, access resources and information, engage in social and cultural activities and provide support and independence in their caring role. However, these experiences were not universal as carers discussed some Challenges for tech inclusion, which included preferences for face-to-face contact, lack of technological literacy and issues associated with the accessibility of the technology. CONCLUSION: Many of the carers engaged with Information and Communication Technologies, and to a lesser extent Assistive Technologies, during the pandemic. Whilst carers experienced different challenges due to where they lived, broadly the use of these devices helped them realise important facets of social inclusion as well as facilitated the support they provided to the person with dementia. However, to reduce the 'digital divide' and support the social inclusion of all dementia carers, our findings suggest it is essential that services are attuned to their preferences, needs and technological abilities.

'Pushing back': People newly diagnosed with dementia and their experiences of the Covid-19 pandemic restrictions in England.

BACKGROUND AND OBJECTIVES: Research into people with dementia's experiences of the Covid-19 pandemic has tended to focus on vulnerabilities and negative outcomes, with the risk of reproducing a discourse in which people with dementia are positioned as passive. Informed by concepts positioning people with dementia as 'active social agents', we aimed to identify the pandemic-related challenges faced by people recently diagnosed with dementia and examine the ways in which they actively coped with, and adapted to, these challenges. RESEARCH DESIGN AND METHODS: In-depth interviews with 21 people recently diagnosed with dementia, recruited through an existing national cohort. Data was analysed thematically using Framework. FINDINGS: Key challenges included reduced social contact, loneliness and loss of social routines; difficulties accessing and trusting health services; dementia-unfriendly practices; and disparate experiences of being able to 'get out' into the physical neighbourhood. People with dementia responded to challenges by maintaining and extending their social networks and making the most of 'nodding acquaintances'; learning new skills, for communication and hobbies; supporting others, engaging in reciprocal exchange and valuing connection with peers; seeking help and advocacy and challenging and resisting dementia-unfriendly practices; maintaining and adapting habitual spatial practices and being determined to 'get out'; and employing similar emotional coping strategies for the pandemic and dementia. CONCLUSIONS: Support for people with dementia, especially during public health crises when carers and services are under pressure, should involve utilising existing capacities, appropriately supporting the acquisition of new knowledge and skills, 'safety-netting' through the availability of a named professional, advocacy and support and use of 'check-in calls' and creating supportive social and environmental circumstances for people with dementia to sustain their own well-being.

The influence of home care supply on delayed discharges from hospital in England.

BACKGROUND: Delayed transfers of care (DTOC) of patients from hospital to alternative care settings are a longstanding problem in England and elsewhere, having negative implications for patient outcomes and costs to health and social care systems. In England, a large proportion of DTOC are attributed to a delay in receiving suitable home care. We estimated the relationship between home care supply and delayed discharges in England from 2011 to 2016. METHODS: Reduced form fixed effects OLS models of annual DTOC attributed to social care at local authority (LA)-level from 2011 to 2016 were estimated, using both number of days and patients as the dependent variable. A count of home care providers at LA-level was utilised as the measure of home care supply. Demand (e.g. population, health, income) and alternative supply (e.g. care home places, local unemployment) measures were included as controls. Instrumental Variable (IV) methods were used to control for any simultaneity in the relationship between DTOC and home care supply. Models for DTOC attributed to NHS and awaiting a home care package were used to assess the adequacy of the main model. RESULTS: We found that home care supply significantly reduced DTOC. Each extra provider per 10 sq. km. in the average local authority decreased DTOC by 14.9% (equivalent to 449 days per year), with a per provider estimate of 1.6% (48 days per year). We estimated cost savings to the public sector over the period of analysis from reduced DTOC due to increased home care provision between £73 m and £274 m (95% CI: £0.24 m to £545.3 m), with a per provider estimate of savings per year of £12,600 (95% CI: £900 to £24,500). CONCLUSION: DTOC are reduced in LAs with better supply of home care, and this reduces costs to the NHS. Further savings could be achieved through improved outcomes of people no longer delayed. Appropriate levels of social care supply are required to ensure efficiency in spending for the public sector overall.

DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their carers (DETERMIND): A protocol paper.

OBJECTIVES: DETERMIND (DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their carers) is designed to address fundamental, and, as yet unanswered questions about inequalities, outcomes and costs following diagnosis with dementia. These answers are needed to improve the quality of care and equity of access to care, and therefore the quality of life, of people with dementia and their carers. METHOD: DETERMIND is a programme of research consisting of seven complementary workstreams (WS) exploring various components that may result in unequal dementia care: WS1: Recruitment and follow-up of the DETERMIND cohort-900 people with dementia and their carers from three geographically and socially diverse sites within six months following diagnosis, and follow them up for three years. WS2: Investigation of the extent of inequalities in access to dementia care. WS3: Relationship between use and costs of services and outcomes. WS4: Experiences of self-funders of care. WS5: Decision-making processes for people with dementia and carers. WS6: Effect of diagnostic stage and services on outcomes. WS7: Theory of Change informed strategy and actions for applying the research findings. OUTCOMES: During the life of the programme, analysing baseline results and then follow-up of the DETERMIND cohort over 3 years, we will establish evidence on current services and practice. DETERMIND will deliver novel, detailed data on inequalities in dementia care and what drives positive and negative outcomes and costs for people with dementia and carers, and identify factors that help or hinder living well with dementia.

Acoustic force measurements on polymer-coated microbubbles in a microfluidic device.

This work presents an acoustofluidic device for manipulating coated microbubbles, designed for the simultaneous use of optical and acoustical tweezers. A comprehensive characterization of the acoustic pressure in the device is presented, obtained by the synergic use of different techniques in the range of acoustic frequencies where visual observations showed aggregation of polymer-coated microbubbles. In absence of bubbles, the combined use of laser vibrometry and finite element modelling supported a non-invasive measurement of the acoustic pressure and an enhanced understanding of the system resonances. Calibrated holographic optical tweezers were used for direct measurements of the acoustic forces acting on an isolated microbubble, at low driving pressures, and to confirm the spatial distribution of the acoustic field. This allowed quantitative acoustic pressure measurements by particle tracking, using polystyrene beads, and an evaluation of the related uncertainties. This process facilitated the extension of tracking to microbubbles, which have a negative acoustophoretic contrast factor, allowing acoustic force measurements on bubbles at higher pressures than optical tweezers, highlighting four peaks in the acoustic response of the device. Results and methodologies are relevant to acoustofluidic applications requiring a precise characterization of the acoustic field and, in general, to biomedical applications with microbubbles or deformable particles.

Standardised data collection from people with dementia over the telephone: A qualitative study of the experience of DETERMIND programme researchers in a pandemic.

There is a notable lack of evidence on what constitutes good practice in remote quantitative data collection from research participants with dementia. During the COVID-19 pandemic face-to-face research became problematic, especially where participants were older and more at risk of infection. The DETERMIND-C19 study, a large cohort study of people with dementia, switched to telephone data collection over this period. This paper explores the experiences of researchers who collected quantitative data over the telephone from people with dementia during the first COVID-19 lockdowns in England. The aim was to learn from these experiences, share insights and inform future research practice across disciplines. Seven DETERMIND researchers were interviewed about the processes and challenges of collecting quantitative data from people with dementia over the telephone compared to face-to-face. Data were analysed using reflexive thematic analysis. Two themes were developed: first the telephone adds an extra layer of confusion to an already cognitively complex interaction. Second, researchers found it difficult to recognise subtle cues that signalled participants' rising emotion over the telephone in time to prevent distress. The researchers employed strategies to support participants which may not have conformed to the strict conventions of structured interviewing, but which were informed by person-oriented principles. Whilst in practice this may be a common approach to balancing the needs of participants and the requirements of quantitative research, it is rare for studies to openly discuss such trade-offs in the literature. Honest, reflective reporting is required if the practice of remote data collection from people with dementia is to progress ethically and with integrity.

How local partnerships to improve urgent and emergency care have impacted delayed transfers of care from hospitals in England: an analysis based on a synthetic control estimation method.

OBJECTIVES: Patients should be discharged from hospital when they are medically fit. However, discharges are often delayed for non-medical reasons including access to social care. One aim of local health and social care partnerships to improve urgent and emergency care in England (known as urgent and emergency care (UEC) vanguards) was to improve integration of health and social care, which could lead to fewer delays. Consequently, we aimed to assess the impact of UEC vanguards on delayed discharges from hospital (delayed transfers of care (DTOC)) in England. DESIGN: Using a synthetic control estimation method 29 local authorities (LAs) that were UEC vanguards partners were averaged into a single 'treated' unit and compared with a unit created using data from LAs that were not UEC vanguards partners to estimate the impact of UEC vanguards on DTOC. Sensitivity analysis included fixed effects panel regressions and various placebo tests. SETTING: 150 LAs in England (excluding city of London and Isles of Scilly); 29 LAs were partners in UEC vanguards between August 2015 and March 2018. PRIMARY OUTCOME MEASURE: Quarterly data on days of DTOC at LA level for the period 2010-2017. RESULTS: Synthetic control estimation showed a large difference in DTOC days between UEC vanguards partner LAs compared with those that were not, with on average 23.7% lower DTOC per quarter (491 DTOC days per quarter). Fixed effect panel regressions found DTOC rates lower by 43.1% (99% CI 13.8% to 72.4%) in UEC partner LAs after the start of the vanguards programme. We found no indication of UEC partner LAs having lower DTOC rates prior to initiation of vanguards. CONCLUSIONS: The evidence indicates a sizeable statistically significant impact of UEC vanguards on DTOC; however, more research is required to explain the underlying reasons for this relationship.

Social care causes of delayed transfer of care (DTOC) from hospital for older people: Unpicking the nuances of 'provider capacity' and 'patient choice'.

Unnecessarily prolonged stays in hospitals can have negative impacts on patients and present avoidable costs to health and social care systems. This paper presents the qualitative findings of a multi-methods study of the social care causes of delayed transfers of care (DTOC) for older people in England. The quantitative strand of this study found that DTOC are significantly affected by homecare supply. In this paper, we explore in depth how and why social care capacity factors lead to delays, from the perspectives of those working within the system. We examined the local transfer arrangements in six English local authority (LA) sites that were purposively sampled to include a range of DTOC performance and LA characteristics. Between March and December 2018, 52 professionals involved in arranging or facilitating discharge from hospitals in these sites provided qualitative data, primarily through semi-structured interviews. Topics included discharge teams and processes, strategic issues and perceived causes of delays. The thematic analysis uncovered the nuances behind the causes of DTOC previously categorised broadly as 'provider capacity' and 'patient choice'. In particular, our analysis highlights the lack of fit between available provision and the needs of people leaving hospital (theme 1); workforce inconsistencies (theme 2) and a myth of patient choice (theme 3). We are now at a turning point in the development of policy to reduce DTOC in the English system, with the full implications of a new national discharge to assess programme yet to be seen. Our research shows the significance of the alignment of service capacity, including the type and location of provision, with the needs and preferences of those leaving hospital. As the new system becomes established, attendance to such nuances behind blockages in the system will be more important than ever.

A cohort study of the impact of COVID-19 on the quality of life of people newly diagnosed with dementia and their family carers.

Introduction: COVID-19 has impacted people with dementia and their family carers, yet little is known about effects on overall quality of life. Methods: In a UK cohort study, pre- and post-pandemic data were collected from 114 carers and 93 recently diagnosed people with dementia. Latent growth curve modeling examined change in quality of life. Results: Carers reported significant decline in quality of life, although no change was demonstrated by people with dementia. In multivariable analyses, higher levels of cognitive impairment, deprivation, study site, and lower number of memory clinic contacts were associated with greater decline in carer quality of life. Discussion: Maintaining life quality for people with dementia during the pandemic appears to have come at the expense of their family carers. This inequity has fallen hardest on those caring for people with more severe dementia, in deprived areas, and with least support from memory services. These effects may be prevented or reversed by post-diagnostic care.

Ten-year experience with hematoma-directed ultrasound-guided (HUG) breast lumpectomy.

BACKGROUND: Pain, patient inconvenience, vasovagal symptoms, scheduling problems, wire malposition, and a positive margin rate of 40-75% are problems commonly associated with needle localized biopsy (NLBB). Despite these issues, NLBB is still the primary means of identifying nonpalpable lesions in the breast. We hypothesized that the hematoma-directed ultrasound-guided (HUG) procedure for intraoperative localization of nonpalpable lesions would allow for lumpectomy without the downfalls of needle localization and decrease the high positive-margin rate with NLBB. METHODS: This is a retrospective study from January 2000 to October 2009. Electronic chart review identified lumpectomy procedures performed in the clinic and operating room. These patients underwent preoperative core-biopsy diagnosis by ultrasound (US) or stereotactic means. When excision was necessary needle localization or HUG was planned. A multifrequency linear array transducer was used intraoperatively for the HUG procedures, and a block of tissue surrounding the hematoma was removed. RESULTS: Localization procedures were performed in 455 patients: 126 (28%) via needle localization and 329 (72%) via HUG. The previous core-biopsy site in 100% of patients was successfully excised using HUG: 152 of 329 (46%) were benign and 177 of 329 (54%) were malignant. Margins were positive in 42 of these 177 cases (24%). was successful in 100% of patients: 88 of 126 (70%) were benign and NLBB 38 of 126 (30%) were malignant; margins were positive in 18 of these 38 (47%). Margin positivity was significantly higher for NLBB than HUG (P = 0.045, Fisher exact). CONCLUSIONS: This 10-year experience, representing the largest to date, suggests that HUG is more accurate in localizing nonpalpable lesions than NLBB. Compared with the additional painful procedure of NLBB, HUG is more time and cost-efficient. Preoperative needle core biopsy is not only the minimally invasive diagnostic procedure of choice, but also becomes the localization procedure when excisional biopsy is necessary.

Making informed choices in social care: the importance of accessible information.

The current policy trend is to encourage greater choice in the use of welfare services. To make informed choices, people need information. The process of finding and using information has costs for individuals in terms of effort, time and material resources. These costs are different for different people and impact on their use of information in different ways. Thus, the accessibility of information is important in ensuring those people who need to make choices can do so in an informed way. This paper discusses the importance of information in making informed choices about social support by drawing on the findings of a scoping review of government research and development activity on the accessibility of information about adult social care services. The scoping review was carried out in spring 2006. Details of recent, current and planned projects were obtained through discussions with staff in government departments, government agencies and other related organisations identified using a snowballing technique. Forty-two contacts were made. Eleven research and 36 development projects were identified that aimed to investigate or improve the accessibility of information about social care services. A limited literature search was undertaken on information needs in areas not already under investigation by government. Eighteen articles were identified. Information and helpline staff from six voluntary organisations gave their views on the accessibility of information about social care services. Our findings show that there is no government-related or other recent research evidence on the specific information access needs for some user groups and services, for example, people from ethnic minority groups. For other user groups, such as people with chaotic lifestyles, there is evidence on information needs but no current or planned development projects to address these needs. The implications for the costs of finding and processing information to aid informed choices are discussed.

The dynamics of commissioning across organisational and clinical boundaries.

PURPOSE: The purpose of the paper is to investigate the inter- and intra-organisational relationships in the commissioning of secondary care by primary care trusts in England, using a principal-agent framework. DESIGN/METHODOLOGY/APPROACH: The methodology is a qualitative study of three case studies. A total of 13 commissioning-related meetings were observed. In total, 21 managers and six consultant surgeons were interviewed. FINDINGS: There are a number of different levels at which contractual and managerial control take place. Different strengths of control at one level can affect willingness to comply with agreements at other levels. Agreements at one level do not necessarily result in appropriate or expected action at another. RESEARCH LIMITATIONS/IMPLICATIONS: The system for commissioning in the National Health Service (NHS) has changed with the introduction of payment by results and practice-based commissioning. However, the dynamics of the inter- and intra-organisational relationships studied remain. PRACTICAL IMPLICATIONS: Incentives within organisations are as important as those between organisations. Within a chain of principal-agent relations, it is important that a strong link in the chain does not result in the exploitation of weaknesses in other links. If government targets and frameworks are to be met through commissioning, it may be advantageous to concentrate efforts on developing incentives that align clinician with NHS trust objectives as well as NHS trust with primary care trust (PCT) and government objectives. ORIGINALITY/VALUE: This paper is based on original empirical work. It uses a principal-agent framework to understand the relationships between PCTs and NHS trusts and highlights the importance of internal NHS trust governance systems in the fulfilment of commissioning agreements.

Acoustofluidic Measurements on Polymer-Coated Microbubbles: Primary and Secondary Bjerknes Forces.

The acoustically-driven dynamics of isolated particle-like objects in microfluidic environments is a well-characterised phenomenon, which has been the subject of many studies. Conversely, very few acoustofluidic researchers looked at coated microbubbles, despite their widespread use in diagnostic imaging and the need for a precise characterisation of their acoustically-driven behaviour, underpinning therapeutic applications. The main reason is that microbubbles behave differently, due to their larger compressibility, exhibiting much stronger interactions with the unperturbed acoustic field (primary Bjerknes forces) or with other bubbles (secondary Bjerknes forces). In this paper, we study the translational dynamics of commercially-available polymer-coated microbubbles in a standing-wave acoustofluidic device. At increasing acoustic driving pressures, we measure acoustic forces on isolated bubbles, quantify bubble-bubble interaction forces during doublet formation and study the occurrence of sub-wavelength structures during aggregation. We present a dynamic characterisation of microbubble compressibility with acoustic pressure, highlighting a threshold pressure below which bubbles can be treated as uncoated. Thanks to benchmarking measurements under a scanning electron microscope, we interpret this threshold as the onset of buckling, providing a quantitative measurement of this parameter at the single-bubble level. For acoustofluidic applications, our results highlight the limitations of treating microbubbles as a special case of solid particles. Our findings will impact applications where knowing the buckling pressure of coated microbubbles has a key role, like diagnostics and drug delivery.

A systematic review of the effect of primary care-based service innovations on quality and patterns of referral to specialist secondary care.

BACKGROUND: Innovations are proliferating at the primary-secondary care interface, affecting referral to secondary care and resource use. Evidence about the range of effects and implications for the healthcare system of different types of innovation have not previously been summarised. AIM: To review the available evidence on initiatives affecting primary care referral to specialist secondary care. SETTING: Studies of primary-secondary care interface. METHOD: Systematic review of trials, using adapted Cochrane Collaboration (effective practice and organisation of care) criteria. Studies from 1980 to 2001 were identified from a wide range of sources. Strict inclusion criteria were applied, and relevant clinical, service and cost data extracted using an agreed protocol. The main outcome measures were referral rates to specialist secondary care. RESULTS: Of the 139 studies initially identified. 34 met the review criteria. An updated search added a further 10 studies. Two studies provided economic analysis only. Referral was not the primary outcome of interest in the majority of included studies. Professional interventions generally had an impact on referral rates consistent with the intended change in clinician behaviour. Similarly, specialist 'outreach' or other primary care-based specialist provider schemes had at least a small effect upon referral rates to secondary care with the direction of effect being that intended or rational from a clinical and sociological perspective. Of the financial interventions, one was aimed primarily at changing the numbers or proportion of referrals from primary to specialist secondary care, and the direction of change was as expected in all cases. The quality of the reporting of the economic components of the 14 studies giving economic data was poor in many cases. When grouped by intervention type, no overall pattern of change in referral costs or total costs emerged. CONCLUSION: The studies identified were extremely diverse in methodology, clinical subject, organisational form, and quality of evidence. The number of good quality evaluations of innovative schemes to enhance the existing capacity of primary care was small, but increasing. Well-evaluated service initiatives in this area should be supported. Organisational innovations in the structure of service provision need not increase total costs to the National Health Service (NHS), even though costs associated with referral may increase. This review provides limited, partial, and conditional support for current primary care-oriented NHS policy developments in the United Kingdom.

Primary care trusts. Ready, steady, stop.

A survey of primary care groups and trusts in South West region found most felt they had little autonomy. Most were level-2 PCGs, taking responsibility for managing a budget for commissioning services. About a third were still relying heavily on their health authority for commissioning. The results suggest that the proposal to allocate 75 per cent of NHS funds to PCTs by 2004 will be unrealistic in some areas.

Changing choices: disabled and chronically ill people's experiences of reconsidering choices.

OBJECTIVES: To increase understanding of disabled and chronically ill people's experiences of revisiting choices by considering events that prompted people to reconsider choices; what factors motivated them to act upon these events and what factors affected their experiences of revisiting choices. METHODS: A sub-sample of 20 disabled and chronically ill people who took part in a qualitative, longitudinal study exploring choice-making in the context of changing circumstances. Each person was interviewed three times. Analysis focussed on choices that people had been prompted to revisit. RESULTS: Most choices were about health or social care and were revisited within a year due to: changes in health or social circumstances; poorer than expected outcomes; and external interventions. People were motivated to make changes by a desire to maintain independence and control, but perceived short-term costs of decision-making could act as a deterrent. Experiences of revisiting choices were affected by help from other people and emotional strength. DISCUSSION: Making and revisiting choices is complex; people need support to engage with the continual cycle of choice-making. People who instigate revisions of their own accord may be particularly vulnerable to lack of support.

Choosing health: qualitative evidence from the experiences of personal health budget holders.

OBJECTIVES: Personal health budgets were piloted in the English National Health Service between 2009 and 2012. Semi-structured interviews with a sub-sample of early budget holders aimed to explore their experiences of receiving and using a budget. METHOD: Over 2000 people from 20 pilot sites were recruited to a multi-method evaluation of the personal health budget pilots. A sub-sample of 58 people was selected for qualitative interviews three months after the offer of a budget; 52 were re-interviewed six months later. The purposively selected sample reflected a range of health conditions, locality, age and gender. RESULTS: Personal health budgets were reported to have positive impacts on health, health care and relatives/family. Benefits often extended beyond the condition for which the budget had been awarded. However, interviewees rarely knew the level of their budget; some reported difficulty in agreeing acceptable uses for their budget; and delays could occur in procuring chosen services or equipment. CONCLUSION: Patients' experiences offer valuable insights for the roll-out of personal health budgets beyond the pilot phase. Flexibility in how budgets are used may allow maximum benefits to be derived. Clear information about what budgets can and cannot be used for, with suggestions offered, will be useful. People with newly diagnosed or recent sudden onset conditions may need more help to plan their support, but all budget holders are likely to benefit from regular contact with staff for reassurance and continued motivation.

Making choices about support services: disabled adults' and older people's use of information.

This paper explores how disabled adults and older people find and use information to help make choices about services. It presents findings from a qualitative longitudinal study in England. Thirty participants had support needs that fluctuated, meaning that additional services might be needed on a temporary basis; and 20 had the sudden onset of support needs resulting from an accident or rapid deterioration in health. Each disabled adult or older person was interviewed three times between 2007 and 2009, using a semi-structured topic guide. They were asked to discuss a recent choice about services, focussing, amongst other things, on their use of information. Interviews were transcribed and coded, then charted according to emergent themes. A wide range of choices and sources of information were discussed. These were dominated by health and to some extent by social care. Key findings are that information was valuable not just in weighing up different service options, but as a precondition for such choices, and that disabled adults and older people with the gradual onset of support needs and no prior knowledge about services can be disadvantaged by their lack of access to relevant information at this pre-choice stage. Timely access to information was also important, especially for people without the support of emergency or crisis management teams. Healthcare professionals were trusted sources of information but direct payment advisers appeared less so. Ensuring that practitioners are confident in their knowledge of direct payments, and have the communication skills to impart that knowledge, is essential. There may be a role also for specialist information advocates or expert lay-advisers in enabling disabled adults and older people to access and consider information about choices at relevant times.