Driving forces for home‐based reablement; a qualitative study of older adults’ experiences

As a result of the ageing population worldwide, there has been a growing international interest in a new intervention termed ‘reablement’. Reablement is an early and time‐limited home‐based intervention with emphasis on intensive, goal‐oriented and interdisciplinary rehabilitation for older adults in need of rehabilitation or at risk of functional decline. The aim of this qualitative study was to describe how older adults experienced participation in reablement. Eight older adults participated in semi‐structured interviews. A qualitative content analysis was used as the analysis strategy. Four main themes emerged from the participants’ experiences of participating in reablement: ‘My willpower is needed’, ‘Being with my stuff and my people’, ‘The home‐trainers are essential’, and ‘Training is physical exercises, not everyday activities’. The first three themes in particular reflected the participants’ driving forces in the reablement process. Driving forces are intrinsic motivation in interaction with extrinsic motivation. Intrinsic motivation was based on the person's willpower and responsibility, and extrinsic motivation was expressed to be strengthened by being in one's home environment with ‘own’ people, as well as by the co‐operation with the reablement team. The reablement team encouraged and supported the older adults to regain confidence in performing everyday activities as well as participating in the society. Our findings have practical significance for politicians, healthcare providers and healthcare professionals by contributing to an understanding of how intrinsic and extrinsic motivation influence reablement. Some persons need apparently more extrinsic motivational support also after the time‐limited reablement period is completed. The municipal health and care services need to consider individualised follow‐up programmes after the intensive reablement period in order to maintain the achieved skills to perform everyday activities and participate in society.     

The Hopkins Rehabilitation Engagement Rating Scale – Reablement Version (HRERS‐RV): Development and psychometric properties

Patient or user engagement with health and social care interventions is receiving increased attention and interest within practice settings and research. An English evaluation of three reablement services wished to include a measure of user‐engagement so as to explore its association with outcomes. As no measure of reablement engagement existed, an existing measure designed for use with physical rehabilitation patients (the Hopkins Rehabilitation Engagement Rating Scale) was adapted and its psychometric properties were tested. The adapted version was completed by reablement staff at the time an individual (n = 129) was discharged from one of the three reablement services. Outcomes data (Barthel Index, Nottingham Extended Activities of Daily Living Scale, General Health Questionnaire‐12) collected by the evaluation study at baseline (that is, at entry into reablement), discharge and 6 months postdischarge was used for some psychometric testing. Internal consistency and construct, predictive and discriminant validity were investigated. The adapted scale measured a single construct and had good internal consistency. Tests of predictive and discriminant validity were positive. Findings from a separate, small‐scale (n = 31) test–retest study offer an early indication that this is acceptable. There was, however, evidence of a ceiling effect and we consider ways this may be ameliorated. The Hopkins Rehabilitation Engagement Rating Scale – Reablement Version offers a means by which user engagement in reablement can be measured using a staff‐completed instrument. The association between engagement and reablement outcomes, revealed when testing for predictive validity, supports the argument for greater attention and investment in research on user engagement in reablement. More broadly, researching engagement within the context of an intervention often delivered by multiple practitioners offers the opportunity to further understand this concept which, in the past, has particularly focused on interventions delivered by a single practitioner. In addition, future work should include developing a companion measure completed by service users.     

Learning from people with long‐term conditions: new insights for governance in primary healthcare

The introduction of top‐down centrally driven solutions to governance of healthcare, at the same time as increasing policy emphasis on greater ‘bottom up’ patient and public involvement in all aspects of healthcare, has set up complex tensions for policy implementation and healthcare practice. This paper explores the interplay of these agendas in the context of changes in primary healthcare services provided by the National Health Service in England. Specifically, it looks at service user involvement in a qualitative study of the professional response to changes in the governance and incentives in the care of people with long‐term conditions. Service users influenced and guided the study at local and national levels. Vignettes of patient stories developed by service users informed in‐depth interviews with 56 health and social care professionals engaged in the development of local policies and services for people with complex long‐term illness, and themes generated by cross case analysis were validated through service users. The findings presented here focus on four themes about risk and comparison of professionals' and service users' perspectives of the issues: managing risks/consistent support, the risks of letting go/feeling in control, professional identity/helping people to help themselves, and managing expectations/professionals losing out. In this study, service user involvement added value by validating understandings of governance, framing debates to focus on what matters at the point of care and enabling perspective sharing and interaction. We suggest that more collaborative forms of governance in healthcare that take account of service user perspectives and enable interaction with professional groups could help validate processes of quality assurance and provide motivation for continuous quality improvement. We offer a model for ‘opening up’ collaborative projects to evaluation and critical reflection of the interrelationships between the context, methods and outcomes of service user involvement.     

Person‐centred care dialectics—Inquired in the context of palliative care

Although a widely used concept in health care, person‐centred care remains somewhat ambiguous. In the field of palliative care, person‐centred care is considered a historically distinct ideal and yet there continues to be a dearth of conceptual clarity. Person‐centred care is also challenged by the pull of standardization that characterizes much of health service delivery. The conceptual ambiguity becomes especially problematic in contemporary pluralistic societies, particularly in the light of continued inequities in healthcare access and disparities in health outcomes. Our aim was to explicate premises and underlying assumptions regarding person‐centred care in the context of palliative care with an attempt to bridge the apparently competing agendas of individualization versus standardization, and individuals versus populations. By positioning person‐centredness in relation to the hermeneutics of the self according to Paul Ric?ur, dialectics between individualization and standardization, and between individuals and populations were constructed. The competing agendas were related in a dialectic manner in the way that population health is of importance for the individual, and standardization is of importance for the population. The analysis suggests that person‐centred care is an ethical stance, which gives prominence to both suffering and capability of the individual as a person. The dialectic analysis points towards the importance of extending person‐centred care to encompass population and societal perspectives and thereby avoiding a problematic tendency of affiliating person‐centred care with exclusively individualistic perspectives. Considerations for person‐centred palliative care on micro‐, meso‐ and macrolevels conclude the paper.     

What constitutes ‘good care’ and ‘good carers’? The normative implications of introducing reablement in Danish home care

As populations worldwide are ageing, Western welfare states are currently implementing welfare reforms aimed at curbing the rising need for social and healthcare services for ageing populations. A central element in home‐care reforms in several welfare countries is reablement: short‐term home‐based training programmes aimed at re‐enabling older people to live in their own homes independently of care. In this paper, we explore how transitioning from compensatory care to reablement care is not merely a practical process, but also a deeply normative one. Drawing on Annemarie Mol's concept of ‘ontonorms’ we analyse the normative dynamics involved in transitioning from one form of care to another as reflected in reablement professionals' practices and discourses. The paper draws on 10 months of multisited ethnographic fieldwork carried out from April 2015 to February 2016 in a Danish municipality, including participant observations of reablement practices as well as qualitative interviews with 13 professionals working with reablement. We demonstrate that professionals generally consider reablement to represent a desirable shift in home care from ‘bad care’ practices of making people passive through compensatory care, towards ‘good care’ practices of ‘keeping people going’ despite their limitations. Moreover, we demonstrate that while therapists are valued as ‘good carers’ due to their ability to focus on development and training, nurses and in particular home helpers are devalued as ‘bad carers’ due to their ‘caring genes’ and lack of technical and theoretical skills necessary for documentation work. Finally, we discuss the implications of these normative dynamics, which may risk stigmatising compensating care practices, although this form of care to a large extent continues to coexist with reablement practices. In conclusion, we argue for a more nuanced approach to care, recognising compensatory care and reablement as complementary forms of care, each doing good under different circumstances.     

Attractiveness of people‐centred and integrated Dutch Home Care: A nationwide survey among nurses

The World Health Organization is calling for a fundamental change in healthcare services delivery, towards people‐centred and integrated health services. This includes providing integrated care around people′s needs that is effectively co‐ordinated across providers and co‐produced by professionals, the patient, the family and the community. At the same time, healthcare policies aim to scale back hospital and residential care in favour of home care. This is one reason for the home‐care nursing staff shortages in Europe. Therefore, this study aimed to examine whether people‐centred, integrated home care appeals to nurses with different levels of education in home care and hospitals. A questionnaire survey was held among registered nurses in Dutch home‐care organisations and hospitals in 2015. The questionnaire addressed the perceived attractiveness of different aspects of people‐centred, integrated home care. In total 328 nurses filled in the questionnaire (54% response rate). The findings showed that most home‐care nurses (70% to 97%) and 36% to 76% of the hospital nurses regard the different aspects of people‐centred, integrated home care as attractive. Specific aspects that home‐care nurses find attractive are promoting the patient′s self‐reliance and having a network in the community. Hospital nurses are mainly attracted to health‐related prevention and taking control in complex situations. No clear differences between the educational levels were found. It is concluded that most home‐care nurses and a minority of hospital nurses feel attracted to people‐centred, integrated home care, irrespective of their educational level. The findings are relevant to policy makers and home‐care organisations who aim to expand the home‐care nursing workforce.     

Tailoring reablement: A grounded theory study of establishing reablement in a community setting in Norway

Reablement is an interprofessional, home‐based rehabilitation service that aims to enable senior residents to cope with everyday life and to prevent functional impairments. Systematic accounts of what practitioners actually do when establishing reablement are lacking. This study aims to generate a grounded theory of practitioners’ patterns of action when establishing reablement. The study is located in Norway, and grounded theory is the methodological approach. Data were collected from January 2014 to August 2016 through participant observations, focus group interviews and individual interviews. Informants are municipal healthcare employees in different organisational areas associated with the process of establishing reablement services (managers of conventional home care and representatives from the administration and service‐provider offices). Altogether, 17 individuals are interviewed. The empirical data are analysed several times using open, selective and theoretical coding. The grounded theory, “tailoring reablement,” includes three phases—replicating, adapting and establishing—and the strategies of collaborating, developing knowledge, habituating and filtering. The theory of tailoring reablement also includes the impact of the contextual factors. The study seeks to bridge the gap between research and practice. The theory of tailoring reablement emerges from an inductive approach and theorises participants’ actions. The theory focuses on the phases from innovation to implementation. Establishing a new service model in a complex welfare setting requires a wide range of actors and agencies. Tailoring reablement also requires flexibility and professional autonomy. It is important to create terms and conditions for this within a stringent health and care service. The insights of this study have implications for practice development of reablement and can fit other public sector fields.     

Cost‐minimisation analysis of home care reablement for older people in England: A modelling study

Many governments have introduced or encouraged home‐care reablement schemes for older people at home with the aim of improving outcomes and reducing costs. We examined if such schemes have the potential to reduce costs from the perspective of the National Health Service (NHS) and Personal Social Services (PSS) in England. Our study was carried out to inform recommendations of a national guideline. Cost‐minimisation analysis was carried out using decision‐analytic Markov modelling. Home‐care reablement was compared with standard home care. Costs included those of the intervention, home care and hospital admission. Uncertainty was explored using univariate and probabilistic sensitivity analysis. Mean costs per person were £56,499 (95% confidence interval 55,690 to 57,307) in the reablement group, and £58,560 (95% confidence interval 57,800 to 59,319) in the standard care group. The mean difference was ‐£2,061 (95% confidence interval 1,933 to 2,129). The probability that home‐care reablement costs less than standard home care was 94.5% (95% confidence interval 93.1 to 95.9). In sensitivity analyses, this probability remained above 85% in all scenarios. Home‐care reablement can be a successful cost‐minimisation strategy for supporting some older people. More research is needed about the impact of home‐care reablement on health outcomes for different groups of older people; and the effects of different durations of reablement on outcomes and costs for different subpopulations.     

How is patient‐centred care understood by the clinical,managerial and lay stakeholders responsible for promoting this agenda?

Aims and objectives This study explores how the term patient‐centred care is understood, particularly by those who are involved in translating the concept from a theoretical idea into a practical application. It examines the ways in which intermediate level stakeholders such as health service managers, educationalists, professional leaders and officers of patient bodies understand and promote patient‐centred care among health professionals actually delivering patient care. Design Qualitative interview study. Setting and participants Interviewees were drawn from groups and organizations from four categories: health agencies and regulatory bodies, Royal Colleges and other professional bodies, educational institutions, patient and user groups and consumer organizations. Main variables studied The meanings and understandings of patient‐centred care, commitment to implementing patient‐centred care and barriers and opportunities to implementation. Results and conclusions Patient‐centred care covers a range of activities from patient involvement in individual care to public involvement in health policy decisions. Current Department of Health policy has made patient‐centred care a priority, but has not clarified exactly what it means. Thus, health professionals, educationalists, managers and patient representatives have all developed different meanings of patient‐centred care to reflect their own particular backgrounds and roles. The individual aspects of patient‐centred care have been neglected in policy terms and important research findings have not been incorporated into policies to change the attitudes and behaviours of health professionals. Developing a shared understanding of patient‐centred care which encompasses all its components is an important role for the new Commission for Patient and Public Involvement.     

Researching nursing practice: does person‐centredness matter?1

Person‐centredness is common speak in nursing and health care literature. Increasingly there is an expectation that practitioners adopt person‐centred principles in their practice and organizations are expected to respect the values of the service user. However, in the research methodology literature, there is little explicit attention paid to the concept of person‐centredness in research practice. Instead, there continues to be a reliance on traditional ‘ethical principles’ to guide effectiveness in research work. This paper argues that the principles of person‐centredness that are espoused in nursing practice should also underpin nursing and health care research. A framework for person‐centred research is proposed and issues concerning its implementation in practice are discussed.     

Information and professional support: key factors in the provision of family-centred early childhood intervention services

Background Much has been written on the principles of family‐centred practice and on the service delivery methods and skills required of its practitioners. Far less has been written from the perspective of families whose children have a disability. The aims of this study were twofold: firstly to understand families' experiences of family‐centred early childhood intervention services and secondly to explore other factors that might impact on these experiences. Methods One hundred and thirty families attending two established early childhood intervention services in New South Wales, Australia completed a survey incorporating the Measure of Processes of Care‐56, the Family Empowerment Scale, the Family Support Scale and the Parenting Daily Hassles Scale. Results Consistent with previous research using the Measure of Processes of Care‐56, ‘respectful and supportive care’ was the domain of care families rated to occur most and ‘provision of general information’ was the domain they rated to occur least. Significant positive relationships existed between families' ratings of family‐centred care and feelings of empowerment. Being provided with general information was strongly correlated with family empowerment. Families' social support networks played an important role but support from professionals was most strongly correlated with families' experiences of family‐centred care. Finally, families whose children's early intervention services were co‐ordinated by a professional experienced significantly better care. Conclusions The provision of general information and professional support are key components of family‐centred early childhood intervention services.     

Community treatment orders: exploring the paradox of personalisation under compulsion

The introduction of supervised community treatment, delivered through community treatment orders (CTOs) in England and Wales, contrasts with the policy of personalisation, which aims to provide service users autonomy and choice over services. This article draws upon findings from a primarily qualitative study which included 72 semi‐structured interviews (conducted between January and December 2012) with practitioners, service users and nearest relatives situated within a particular NHS Trust. The article also refers to a follow‐on study in which 30 Approved Mental Health Practitioners were interviewed. The studies aimed to develop a better understanding of how compulsory powers are being used in the community, within a policy context that emphasises personalisation and person‐centred care in service delivery. Findings from the interview data (which were analysed thematically) suggest that service users were often inadequately informed about the CTO and their legal rights. Furthermore, they tended to be offered little, or no, opportunity to make choices and have involvement in the making of the CTO and setting of conditions. Retrospectively, however, restrictions were often felt beneficial to recovery, and service users reported greater involvement in decisions at review stage. Areas of good practice are identified through which person‐centred care can be better incorporated into the making of CTOs.     

Evaluation of the processes of family‐centred care for young children with intellectual disability in Western Australia

Introduction Government early intervention services for children with intellectual disability (ID) in Western Australia have adopted the model of family‐centred care. The aim of this study was to evaluate how well it was being practised, to describe the pattern of service utilization and to identify factors influencing parental perceptions of family‐centred care. Methods The study included children aged 0–6 years with ID, who were registered clients of Disability Services Commission, Western Australia. Parents completed a postal survey questionnaire about the frequency and type of services received and their perceptions of services using the Measure of Processes of Care (MPOC‐56) questionnaire. Mean scores for the five MPOC domains were compared using anova against the independent variables of child age group, child diagnostic group, service type and frequency, place of residence, family and demographic variables. Significant variables in each domain were then entered into multivariate analyses. Results Of 292 eligible families, 165 (59%) returned a completed questionnaire. While over 50% of children had contact with occupational, speech and physical therapists at least once per month, less than 20% of children had at least annual contact with either psychology or dental services. Families rated their satisfaction highest for ‘respectful and supportive care’ and lowest for ‘providing general information’. Individual item analyses indicated less satisfaction with ‘co‐ordinated and comprehensive care’. Higher means were associated with more frequent contact with occupational therapy. Conclusion Overall respondents reported early intervention services for young children with ID in Western Australia provided satisfactory family‐centred care by means of the 56‐item MPOC. The frequency of contact with allied health professionals was positively associated with parental ratings of family‐centred care. The study indicates under‐servicing in dental care and psychology services.     

Epistemic injustices in clinical communication: the example of narrative elicitation in person‐centred care

The increasing popularity of the term ‘person‐centred’ in the healthcare literature and a wide range of ideals and practices it implies point to the need for a more inclusive and holistic healthcare provision. A framework developed in a Swedish context suggested narrative elicitation as a key practice in transition to person‐centred care. Initiating clinical communication by inviting people to tell their stories makes persistent yet often subtle problems in clinical communication visible. By drawing upon an observational study on narrative elicitation and vignette‐based focus group interviews with nurses, our aim is to trace ‘credibility deficits’ (Fricker 2007. Epistemic Injustice. Power and the Ethics of Knowing. Oxford: Oxford University Press) and ‘credibility excesses’ (Medina 2011, Social Epistemology, 25, 1, 15–35, 2013, The Epistemology of Resistance: Gender and Racial Oppression, Epistemic Injustice, and the Social Imagination. Oxford: Oxford University Press) in narrative elicitation. We argue that narrative elicitation may be one way to tackle epistemic injustices by giving voice to previously silenced groups, yet it is not enough to erase the effects of ‘credibility deficits’ in clinical communication. Rather than judging individual professionals’ success or failure in eliciting narratives, we underline some extrinsic problems of narrative elicitation, namely structural and positional inequalities reflecting on narrative elicitation and the credibility of patients. ‘Credibility excesses’ can be useful and indicative to better understand where they are missing.     

A cyborg ontology in health care: traversing into the liminal space between technology and person‐centred practice

Person‐centred practice indubitably seems to be the antithesis of technology. The ostensible polarity of technology and person‐centred practice is an easy road to travel down and in their various forms has been probably travelled for decades if not centuries. By forging ahead or enduring these dualisms, we continue to approach and recede, but never encounter the elusive and the liminal space between technology and person‐centred practice. Inspired by Haraway's work, we argue that healthcare practitioners who critically consider their cyborg ontology may begin the process to initiate and complicate the liminal and sought after space between technology and person‐centred practice. In this paper, we draw upon Haraway's idea that we are all materially and ontologically cyborgs. Cyborgs, the hybridity of machine and human, are part of our social reality and embedded in our everyday existence. By considering our cyborg ontology, we suggest that person‐centred practice can be actualized in the contextualized, embodied and relational spaces of technology. It is not a question of espousing technology or person‐centred practice. Such dualisms have been historically produced and reproduced over many decades and prevented us from recognizing our own cyborg ontology. Rather, it is salient that we take notice of our own cyborg ontology and how technological, habitual ways of being may prevent (and facilitate) us to recognize the embodied and contextualized experiences of patients. A disruption and engagement with the habitual can ensure we are not governed by technology in our logics and practices of care and can move us to a conscious and critical integration of person‐centred practice in the technologized care environments. By acknowledging ourselves as cyborgs, we can recapture and preserve our humanness as caregivers, as well as thrive as we proceed in our technological way of being.     

Home care as reablement or enabling arrangements? An exploration of the precarious dependencies in living with functional decline

The threat to welfare societies posed by population ageing has urged high‐income countries to rethink the provision of social and healthcare services for the ageing population. One widely implemented policy solution is ‘reablement’: short‐term home‐based training programmes focusing on re‐enabling older people to carry out activities of daily living independently. Drawing on empirical material from multisited ethnographic fieldwork of reablement practices in a Danish municipality we explore how the assumptions about independence embedded in the concept's linguistic parts – ‘re’, ‘able’ and ‘ment’ – map onto lives characterised by functional decline. We find that home care applicants: (i) are often too deeply dependent on the capacities of others in order to have their independence restored; (ii) negotiate individual meanings of independence to maintain their identity as able human beings; and (iii) might possibly gain new capacities through reablement, yet these are not individual and stable achievements, but rather temporary effects of the care relations with eldercare professionals. Rather than reablement we, therefore, suggest the term ‘enabling arrangements’ as more appropriate for capturing independence as a distributed, negotiated and continuous accomplishment. Finally, we discuss the practical and ethical implications of this term.