Personalisation Agenda Research Articles

Disabled people negotiate gender, sexual identity and self-directed social care support in England: how does choice and control operate?

Putting disabled people in charge of their own support was a central component of the UK personalisation agenda. Austerity, staff recruitment difficulties and local authority retrenchment have meant that the experience for disabled people has not always lived up to the rhetorical promise. In this context, disabled people with marginalised sexual and/or gender identities face difficult choices in everyday interactions of support that trouble the idea that control routinely sits with them. In this article, we draw on two research studies with disabled people who use self-directed support in which they discuss navigating gender and sexual identity. In both studies, there are opportunities for disabled people to draw on support that is empowering, but we also hear about ‘bad bargains’ that they are sometimes forced to make. We argue that the hard-won goals of choice and control are being degraded and confronting LGBTQI+ and non-binary disabled people with sometimes impossible dilemmas.

A novel approach to the implementation of Making Every Contact Count

BackgroundMaking Every Contact Count (MECC) is an approach to behaviour change introduced by Public Health England in 2008. Derbyshire have implemented MECC using the Quality Conversation (QC) programme which is based around health coaching and psychology skills and delivered remotely by qualified coaches. This study is an initial evaluation of the QC programme. MethodsParticipants from Derbyshire health, social care, and voluntary organisations were invited to enrol on the QC programme. Before and after analysis of qualitative responses to example patient scenarios using an exact McNemar's test was done. A Wilcoxon signed-rank test was used to measure significant differences in quality conversation skills before and after the training programme. Participant data was analysed using SPSS software (version 28·0·0·0). Written consent for was provided by participants on completion of the feedback form. FindingsBetween July 1, 2020, and March 31, 2022, there were 1277 participants on the core QC training. There were significant differences in knowledge and confidence in using QC skills following training (eg, confidence in active listening, Z = –189·09; p <0·0001). There was a significant difference in the proportion of QC-consistent responses (eg, skills such as validation and open questions, p<0·0001). Further, there was a significant difference in self-rated confidence with responding to example patient scenarios pre and post-training (Z = –118·81; p <0·0001). At 2-month follow-up, 91% of follow-up respondents (N =225) strongly agreed or agreed that the learning from the QC programme had been relevant to their role. InterpretationQC is a novel approach to the implementation of MECC, through reframing the focus to supporting changes in staff communication behaviours. Findings presented suggests QC might represent a scalable approach to the effective implementation of MECC. This is an important finding given the potential of MECC to support health and social care systems to address health inequalities and support the personalisation agenda. FundingJoined Up Care Derbyshire Integrated Care System.

Constituting link working through choice and care: An ethnographic account of front-line social prescribing.

Link worker social prescribing has become a prominent part of NHS England's personalisation agenda. However, approaches to social prescribing vary, with multiple discourses emerging about the potential of social prescribing and different interpretations of personalisation. The transformational promise of social prescribing is the subject of ongoing debate, whilst the factors that shape the nature of front-line link working practices remain unclear. Based on 11months of in-depth ethnographic research with link workers delivering social prescribing, we show how link workers' practices were shaped by the context of the intervention and how individual link workers navigated varied understandings of social prescribing. Following the work of Mol, we show how link workers drew differentially on the interacting logics of choice and care and trace a multiplicity in front-line link working practices within a single intervention. However, over time, it appeared that a logic of choice was becoming increasingly dominant, making it harder to deliver practices that aligned with a logic of care. We conclude that interpreting personalisation through a logic of choice could potentially undermine link working practices that privilege care whilst obscuring the need for wider investment in health care systems and the social determinants of health.

Personalisation policy in the lives of people with learning disabilities: a call to focus on how people build their lives relationally

Social care provision across high-income countries has been transformed over the last ten years by personalisation – a policy agenda to give people with eligible support needs more choice and control over their support. Yet the ideological underpinnings of this transformation remain highly mutable, particularly in the context of reduced welfare provision that has unfolded in many nations advancing personalisation. How the policy has manifested itself has led to an expectation for people to self-build a life as individual consumers within a care market. This article draws on a study exploring how people with learning disabilities in England and Scotland are responding to the everyday realities of personalisation as it is enacted where they live and show the relationality inherent in their practices. We propose that the personalisation agenda as it currently stands (as an individualising movement involving an increasing responsibilisation of individuals and their families) ignores the inherently relational nature of care and support. We propose that social care policy needs to recognise the relational ways in which people build their lives and to advocate a redistribution of responsibility to reduce inequalities in the allocation of care.

Exploring the role of age as a moderator of cognitive remediation for people with schizophrenia

BackgroundWhile Cognitive Remediation (CR) is effective in reducing cognitive and functioning difficulties in people with schizophrenia, there is variability in treatment response. Previous research suggested that participants' age may be a significant moderator of CR response. AimTo examine the impact of participants' age on CR outcomes. MethodIndividual participant data were accessed from fourteen CR randomised controlled trials. We tested the moderating effect of participants' age on cognitive and functioning outcomes using multivariate linear models. ResultsData from 1084 people with a diagnosis of schizophrenia were considered. Participants had a mean age of 36.6 years (SD 11), with 11.6 years of education (SD 2.8), and an average duration of illness of 13.5 years (SD 10.7). Multivariate models showed that participants' age, when considered as a continuous variable, was not a significant moderator of treatment effect for cognitive and functioning outcomes. However, when participants were split by median age, younger participants showed higher gains in executive functions following CR compared to older participants (p=0.02). ConclusionThese results suggest that participants' age does not moderate most CR outcomes. However, larger age differences may influence the effect of CR on executive function. This may suggest some adaptation of CR practice according to participants' age. These findings inform the CR personalisation agenda.

Transition to where and to what? Exploring the experiences of transitions to adulthood for young disabled people

ABSTRACT Transition to adulthood for young disabled people remains a major policy failure across OECD countries. The support available is often inappropriate, fails to meet young peoples’ needs and they fall through the cracks, becoming lost in the system. Much of the work on transition takes a narrow approach, focussing on the shift from paediatric to adult services in health and social care. Drawing on interviews with young disabled people, collected as part of an evaluation of a new cash-based transitions fund, we explore transitions for young disabled people in Scotland. Like the wider personalisation agenda, this fund aims to promote autonomy and individual responsibility. We examine and critique this approach and argue that while the emphasis on young people and their families as social entrepreneurs can facilitate transition, it can also act as a barrier by failing to tackle broader structural constraints faced by young disabled people. We argue that whilst it is important to promote individual agency, structural disadvantage and inequality frame the transition process and these also have to be tackled. This is harder, and arguably more expensive, but without it there is a danger that attempts to improve transition for young disabled people will fail.

Caregiving and quality of life

ABSTRACT The increase in life expectancy for adults with learning disabilities has extended the caring role for their parents. This study examined the experiences of older parents who provide long-term care for their adult children with learning disabilities and how they conceptualise their quality of life. Data were collected using semi-structured interviews with 27 older parent carers from four London boroughs and were analysed using framework technique. Findings indicate that most parents appraised their quality of life positively and reported benefits, despite the challenges they had to negotiate daily. The benefits from caregiving, more so in later life, were: a connected family from shared caregiving; a sense of belonging; purposeful living; a reciprocal relationship with their adult children; and personal transformations from providing care that improved their quality of life. The challenges that participants regularly encountered were: multiple losses (sleep, career, identity and friends); the added stress of the government’s Personalisation Agenda of caring services; struggles for access to services; searching for a diagnosis; worry about future care and fear of abuse when carers are unable to continue in their role; unhelpful attitudes of health and social care professionals; and a lack of empathy from friends as well as the public towards people with learning disabilities. Caregiving and quality of life are inextricably linked and the difficulties that parents experienced were mainly associated with socio-structural barriers, rather than their children’s disabilities. Importantly, the findings inform the practice of social workers and others who support this unique group of carers by providing new insights into how caring impacts on quality of life over time and how best these parents’ needs can be met. This study makes a specific contribution to understanding the lived realities of older carers and extends current conceptualisations of caregiving and quality of life among older people.

Enabling older adults to carry out paperless falls-risk self-assessments using guidetomeasure-3D: A mixed methods study.

The home environment falls-risk assessment process (HEFAP) is a widely used falls prevention intervention strategy which involves a clinician using paper-based measurement guidance to ensure that appropriate information and measurements are taken and recorded accurately. Despite the current use of paper-based guidance, over 30% of all assistive devices installed within the home are abandoned by patients. This is in part due to poor fit between the device, the patient, and the environment in which it is installed. Currently HEFAP is a clinician-led process, however, older adult patients are increasingly being expected to collect HEFAP measurements themselves as part of the personalisation agenda. Without appropriate patient-centred guidance, levels of device abandonment to are likely to rise to unprecedented levels. This study presents guidetomeasure-3D, a mobile 3D measurement guidance application designed to support patients in carrying out HEFAP self-assessments. The aim of this study is to present guidetomeasure-3D, a web-enabled 3D mobile application that enables older-adult patients to carry out self-assessment measurement tasks, and to carry out a mixed-methods evaluation of its performance, and associated user perceptions of the application, compared with a 2D paper-based equivalent. Thirty-four older adult participants took part in a mixed-methods within-subjects repeated measures study set within a living lab. A series of HEFAP self-assessment tasks were carried out according to two treatment conditions: (1) using the 3D guidetomeasure-3D application; (2) using a 2D paper-based guide. SUS questionnaires and semi-structured interviews were completed at the end of the task. A comparative statistical analysis explored performance with regards to measurement accuracy, accuracy consistency, task efficiency, and system usability. Interview transcripts were analysed using inductive and deductive thematic analysis (informed by UTAUT). The guidetomeasure-3D application outperformed the 2D paper-based guidance in terms of accuracy (smaller mean error difference in 11 out of 12 items), accuracy consistency (p < 0.05, for 6 out of 12 items), task efficiency (p = 0.003), system usability (p < 0.00625, for two out of 10 SUS items), and clarity of guidance (p < 0.0125, for three out of four items). Three high-level themes emerged from interviews: Performance Expectancy, Effort Expectancy, and Social Influence. Participants reported that guidetomeasure-3D provided improved visual quality, clarity, and more precise guidance overall. Real-time audio instruction was reported as being particularly useful, as was the use of the object rotation and zoom functions which were associated with improving user confidence particularly when carrying out more challenging tasks. This study reveals that older adults using guidetomeasure-3D achieved improved levels of accuracy and efficiency along with improved satisfaction and increased levels of confidence compared with the 2D paper-based equivalent. These results are significant and promising for overcoming HEFAP equipment abandonment issue. Furthermore they constitute an important step towards overcoming challenges associated with older adult patients, the digitisation of healthcare, and realising the enablement of patient self-care and management via the innovative use of mobile technologies. Numerous opportunities for the generalisability and transferability of the findings of this research are also proposed. Future research will explore the extent to which mobile 3D visualisation technologies may be utilised to optimise the clinical utility of HEFAP when deployed by clinicians.

The personalisation agenda: the case of the Australian National Disability Insurance Scheme

ABSTRACTAs part of the international trend towards personalisation, in 2013 Australia launched a major disability scheme aiming to give participants greater choice and control over services. The scheme aims to cover a wide diversity of disabilities, services and significant geographical area – resulting in a highly complex system of local overlapping markets. At four years into implementation a range of challenges have emerged. In this paper we firstly describe the Australian National Disability Insurance Scheme, then explore a range of implementation challenges it currently faces as a large-scale personalisation scheme. Based on these experiences we pose a range of questions for similar schemes internationally.

The morphogenesis of disability policies and the personalisation of social services. A case study from Italy.

ABSTRACTAcross Europe, and particularly since the 2008 Financial Crisis, new demands for tailor-made services came from different actors and perspectives: user-led organizations, intellectuals, policy makers, social workers, advocacy organizations, which call for a new way of programming, realizing and evaluating social policies. Personalization became a relevant part of the so called ‘welfare innovation narrative’, which concerns – to name but a few – English personalization agenda, Scottish self-directed support, Finnish education system, Norwegian cash-for-care policies. Even the European Commission is addressing new social services, reshaped through users’ capabilities. The aim of this paper is to critically explain, through a case study focused on the Sardinian disability policy, how social policy's morphogenetic cycles influence the governance of personalized disability plans and, consequently, the possibility of their implementation.

Personalisation as vision and toolkit. A case study

ABSTRACTWith the objective to eradicate disability related discrimination and promote choice, control, independence and inclusion for all individuals, the personalisation agenda paved the way for a transformation of social care and disability services in the UK. This paper explores personalisation both as a vision of care and support services and as a toolkit promoted by government policies in order to allow for such vision to translate into practice – the use of direct payments and personal budgets being an example. A qualitative case study analysis has been conducted in the context of care services for disabled young people and by means of in-depth interviews with professionals, parents and the young people themselves. Such analysis reconstructs the implementation of personalisation showing how the toolkit offered by government policies has been used and interpreted differently by the different actors in the field and how this has brought to a wide range of opportunities but also risks. What seems to emerge from the study is that the vision of personalisation risks being hampered by its toolkit and that alternatives might be needed in order to safeguard the potential of personalisation as a vision.

Changing the culture of social care in Scotland: Has a shift to personalization brought about transformative change?

AbstractIn April 2014, the Social Care (Self‐directed Support) (Scotland) Act 2013 (SDS Act) was implemented in Scotland. This marked a major shift in how social care is delivered and organized for both users and professionals across the country. Whilst it emerged through the personalization agenda—which has dominated international social care systems over recent years—self‐directed support (SDS) represented a significant shift in thinking for service provision in Scotland. In this article, we review the initial stages of policy implementation. Drawing on two Freedom of Information requests from 2015 and 2016 and a series of interviews with local authority practitioners, we argue that, to date, SDS has yet to produce radical transformative change. We explore the reasons behind this through four key themes. First, we highlight the challenges of promoting the principles of co‐production in policy and suggest that, in reality, this has been compromised through SDS implementation. Second, we suggest that SDS has been caught up in a policy overload and ultimately overshadowed by new legislation for health and social care integration. In looking at the impact of this relationship, our third theme questions the role of new partnership working. Lastly, we argue that the timing of SDS in a period of acute austerity in social care has resulted in disabled people being offered limited choice rather than increased opportunities for independent living.

Health System Performance Measurement: A UK Perspective.

In response to the lead article by Kuluski et al. (2017), this commentary draws on UK debates around the quality of healthcare and on the author's personal experience training as a social worker. Judging whether a service has "worked" has to involve understanding what a good outcome would be for the person receiving it. While carers provide important insights here, the "user" may have a different view, and reconciling different perspectives can be challenging. Although individual services may have fulfilled their part of the process, it is important to look at the person's overall experience (although this is difficult to achieve in practice). There is also no point measuring patient experience if we are not prepared to really listen to the feedback we receive. Moving forward, the UK's personalization agenda - which focuses on giving people greater choice and control - may enhance the aims of Kuluski et al.'s work.

Ageing and Learning ICT Skills: Implications for social care

This paper explores the narratives of older women engaged in learning at an Age UK Community Centre, in England in 2014. The participants of this small pilot study were primarily learning ICT (Information and Communications Technology) skills. This study contextualises lifelong learning by acknowledging that learning is a need of older adults in the context of the personalisation agenda, the Care Act 2014, and human rights. We analyse the data by drawing on two broad understandings of the different motives for learning: instrumental and expressive (Londoner, 1978). This provides a useful framework to explore the social and cultural influences behind motivations to learn. The study suggests that the two categories of learning motives overlap, yet the rationales given by older adults depicted how learning was not conceived solely as the acquisition of formal knowledge; instead, it was essentially driven by a socially enacted process. We conclude by emphasising how learning is an indispensable aspect of social care. We suggest that a re-conceptualisation of ‘care’ and ‘need’ may be required during assessment practices when working with older adults’, as motives for learning here were grounded in social participation and the search for a sense of meaning and purpose towards their identity in older age. Keywords: Older adults, Identity, Narrative, Lifelong Learning, Personalisation.

La personnalisation des services de santé mentale : une voie d’avenir

To demonstrate the pertinence of putting personalisation at the heart of mental health services. Review of littérature of personalisation research and intervention in the United Kingdom, the country where the personalisation is one of the key themes of the health and social services reform agenda. Presentation of the key challenges in the personalisation agenda and also of web tool directly inspired by research and practices in the UK. We think that individuals want to be treated as citizens that want control and choice over their destiny.

Disabled people, choices and collective organisation: examining the potential of cooperatives in future social support

Major shifts in funding, demography, personal expectations and the rise of a global disabled people’s movement require new and creative solutions to the choices and rights agenda into the twenty-first century. Direct payments and the individual employment of personal assistants is one clear and recognised path to independent living. However, there have been some reservations about the nature, process and impact of the broader personalisation agenda more generally within which direct payments and personal budgets are located. Some commentators point to the loss of the collective impulse in personalised approaches – ideas that were central to the development of the independent living movement and its founding principles. Some countries have seen the rise of collective responses to direct payment developments. This is explicable in terms of a suspicion of individualist underpinnings of personalisation coupled with a collective vision of social life. This article is based on an exploratory study of collective approaches in the field of direct payments where choice and social solidarity are being combined. Drawing on developments in Sweden, England and Wales, the article aims to inform possible future debates about direct payments and cooperative approaches and argues that greater user-control is not inimical to enhanced collective action.

Indirect payments: when the Mental Capacity Act interacts with the personalisation agenda.

This paper reports findings from a study that aimed to explore how practitioners were bringing together the demands of the personalisation agenda, in particular the offer of direct payments (DPs), with the Mental Capacity Act, and to investigate current practices of offering and administering indirect payments for people who lack capacity to consent to them, including the use of 'suitable person' proxies under the new regulations (DH, 2009). The study adopted a qualitative interview-based design; participants were social work practitioners (67) and recipients of 'indirect' payments (18) in six local authorities in England in 2011-2012. The paper reports on five key decision-making points in the indirect payments process: the decision to take on an indirect payment, the assessment of mental capacity, the identification of a suitable person, the establishment of the care recipient's best interests and the decisions about how to execute the indirect payment. We found that practitioners and suitable people had different experiences of the system, although in both cases, there was overarching support for the benefits of enabling people who lack capacity to consent to a DP to receive their social care funding in the form of an 'indirect' payment via a proxy suitable person.

Transform Social Care?

Defined as very small enterprises with five or fewer workers, micro-enterprises are organisations established and managed by local people, including those who are themselves disabled. They are viewed as particularly innovative as their personalised nature challenges traditional ways of providing social care. As a result, they have been promoted as part of the English government’s personalisation agenda. Yet there is little empirical evidence to support the benefits of micro-enterprises over larger care providers. This paper reports early findings of two year study evaluating the performance of micro-enterprises within adult social care in England, focusing in particular on the extent to which they are innovative. It draws on two data sources; an evidence review of non-traditional services and service users, and interviews with micro-enterprise staff and co-ordinators across three English case study sites. The paper reports that micro-enterprises do appear to be more innovative than larger care providers as they are able to provide more person-centred and targeted services. We argue that they display three types of innovation; who innovations (targeting nontraditional service users), what innovation (non-traditional services) and how innovations (more interaction and flexibility in care provision).

Campaign-Personalization and Constituency Focus in a Mixed-Member Electoral System. The Case of Hungary

AbstractThe aim of this paper is to uncover the micro-factors structuring campaign personalization in the case of Hungarian Members of Parliament. It is presumed that in a party-centred environment, the effects of the various independent characteristics are filtered by the parties. Thus, due to the electoral rules, personalization cannot contradict party centeredness. Representatives do not wish to distance themselves from their parties. Personalization is more of the result of the positions they hold or wish to fill in than the desire to defy party lines out of individualistic motivations. Based on the data from the 2010 MP-survey of the Hungarian Election Study, the article unveils the circumstances under which campaign personalization prevails. The international scholarly literature sets several hypotheses with regards to the factors influencing three dimensions of campaign personalization (norms, means and agenda), out of which several will be tested in this article. The analysis concludes that even under party-centred circumstances, the role of individual motivations and habits cannot be overlooked in defining the degree of personalization, nevertheless the interpretation of such effects requires caution.

Personalisation, ambiguity and conflict: Matland’s model of policy implementation and the ‘transformation’ of adult social care in England

The article draws on Matland’s (1995) modelling of policy implementation to investigate the personalisation of adult social care in England. The shift from policy formation to enactment by local authorities is linked to a move from ‘symbolic’ to ‘political’ implementation. Successive studies, however, highlight certain enduring features of local authorities as sites of contradiction and dissent in adult social care, particularly on the frontline. Taking these into account arguably permits a closer analysis of the dynamics of power at work in the implementation of the personalisation agenda as well as enriching our understanding of the nature of political implementation.