Making the invisible more visible: Reflections on practice-based humanising lifeworld-led research - existential opportunities for supporting dignity, compassion and wellbeing.

BACKGROUND: The need for dignity and compassion in healthcare is enshrined in policy, but is often difficult to enact in practice and what is precisely meant by these concepts is unclear. In this paper, we have explored theoretical underpinnings which form the basis of a lifeworld-led approach which was used in a research study to support the humanity of service providers and users alike. AIM: In this article, we share our analysis of what we have learnt after undertaking an innovative appreciative action research project with patients and staff in a stroke ward with the aim of exploring if a novel phenomenologically driven and philosophically derived humanising framework could be applied in health care. Following the research, we wanted to develop a theoretical understanding of the processes occurring during the research in order to provide a framework and language which could be used to support practical lifeworld developments in the future. We analysed the approach through Participatory and Appreciative Action Reflection. FINDINGS: As researchers, we found that the approach was underpinned by four key existential principles. The first principle was recognising a mutually arising reality rather than a reality 'out there'. The second was recognising a reality which was constantly changing rather than 'fixed'. The third was recognising that we needed to work from within, as part of a human living system rather than trying to control reality from the 'outside'. Finally, we recognised that this reality could only be accessed through human knowing, including embodied knowing rather than intellectual knowing alone. These principles challenged many of the usual ways of thinking and working within research and healthcare contexts. CONCLUSION: Understanding the processes and reality in this way gave new perspectives; enhancing our understandings and views of ourselves, what is important and most importantly what is possible in caring systems.

Facilitating a dedicated focus on the human dimensions of care in practice settings: Development of a new humanised care assessment tool (HCAT) to sensitise care.

There is limited consensus about what constitutes humanly sensitive care, or how it can be sustained in care settings. A new humanised care assessment tool may point to caring practices that are up to the task of meeting persons as humans within busy healthcare environments. This paper describes qualitative development of a tool that is conceptually sensitive to human dimensions of care informed by a life-world philosophical orientation. Items were generated to reflect eight theoretical dimensions that constitute what makes care feel humanly focused. An action research group process in 2014-2015 with researchers, service users, healthcare professionals in two diverse clinical settings (stroke rehabilitation and dermatology) was used. Feedback on conceptual content, transparency of meaning and readability was then gained from a panel in Sweden and third-year student nurses in the UK. The tool can be applied to attune staff to human dimensions of care, offering items which point to concrete examples of humanising and dehumanising features of practice in ways that have not yet been fully captured in the caring literature. Based on theoretically led experiential items, with dedicated focus on what makes people feel more, or less than human, it may offer improvement on available assessments of care.

Rehabilitation using virtual gaming for Hospital and hOMe-Based training for the Upper limb post Stroke (RHOMBUS II): protocol of a feasibility randomised controlled trial.

INTRODUCTION: Upper limb (UL) rehabilitation is most effective early after stroke, with higher doses leading to improved outcomes. For the stroke survivor, the repetition may be monotonous. For clinicians, providing a clinically meaningful level of input can be challenging. As such, time spent engaged in UL activity among subacute stroke survivors remains inadequate. Opportunities for the stroke survivor to engage with UL rehabilitation in a safe, accessible and engaging way are essential to improving UL outcomes following stroke. The NeuroBall is a non-immersive virtual reality (VR) digital system designed for stroke rehabilitation, specifically for the arm and hand. The aim of the Rehabilitation using virtual gaming for Hospital and hOMe-Based training for the Upper limb post Stroke study is to determine the safety, feasibility and acceptability of the NeuroBall as a rehabilitation intervention for the UL in subacute stroke. METHODS AND ANALYSIS: A feasibility randomised controlled trial (RCT) will compare the NeuroBall plus usual care with usual care only, in supporting UL rehabilitation over 7 weeks. Twenty-four participants in the subacute poststroke phase will be recruited while on the inpatient or early supported discharge (ESD) stroke pathway. Sixteen participants will be randomised to the intervention group and eight to the control group. Outcomes assessed at baseline and 7 weeks include gross level of disability, arm function, spasticity, pain, fatigue and quality of life (QoL). Safety will be assessed by recording adverse events and using pain, spasticity and fatigue scores. A parallel process evaluation will assess feasibility and acceptability of the intervention. Feasibility will also be determined by assessing fidelity to the intervention. Postintervention, semistructured interviews will be used to explore acceptability with 12 participants from the intervention group, four from the usual care group and with up to nine staff involved in delivering the intervention. ETHICS AND DISSEMINATION: This trial has ethical approval from Brunel University London's Research Ethics Committee 25257-NHS-Oct/2020-28121-2 and the Wales Research Ethics Committee 5 Bangor (Health and Care Research Wales) REC ref: 20/WA/0347. The study is sponsored by Brunel University London. CONTACT: Dr Derek Healy, Chair, University Research Ethics committee (Derek.healy@brunel.ac.uk). Trial results will be submitted for publication in peer-reviewed journals, presented at national and international conferences and distributed to people with stroke. TRIAL REGISTRATION NUMBER: ISRCTN11440079; Pre-results.

A lifeworld theory-led action research process for humanizing services: improving "what matters" to older people to enhance humanly sensitive care.

Purpose: Using a theory-led action research process test applicability of humanizing care theory to better understand what matters to people and assess how the process can improve human dimensions of health care services. Consideration of the value of this process to guide enhancements in humanly sensitive care and investigate transferable benefits of the participatory strategy for improving human dimensions of health care services. Methods: Action research with service users, practitioners and academics, with participatory processes led through the application of theory via a novel Humanizing Care Framework in two diverse clinical settings. Results: Participants engaged in a theory-led participatory process, understood and valued the framework seeing how it relates to own experiences. Comparative analysis of settings identified transferable processes with potential to enhance human dimensions of care more generally. We offer transferable strategy with contextualized practical details of humanizing processes and outcomes that can contribute to portable pathways to enhance dignity in care through application of humanizing care theory in practice. Conclusion: The theoretical framework is a feasible and effective guide to enhance human dimensions of care. Our rigorous participative process facilitates sharing of patient and staff experience, sensitizing practitioners' understandings and helping develop new ways of providing theoretically robust person-centred care based on lifeworld approaches.

'What happens when I can no longer care?' Informal carers' concerns about facing their own illness or death: a qualitative focus group study.

OBJECTIVES: Older informal carers play an increasingly important role in supporting others with long-term health conditions. This study aimed to explore in depth the perspectives of older carers (70+ years) supporting others with a variety of conditions and disabilities focusing on their thoughts and experiences about when they are unable to continue caring. DESIGN: Qualitative with four focus groups. SETTING: Greater London, UK. PARTICIPANTS: 28 older carers (70+ years) recruited from the voluntary sector participated in this study. Most were women and many were spouses caring for partners with age-related conditions such as dementia, arthritis and visual impairment. Nearly a third were parents of adult children with severe physical or cognitive disabilities. FINDINGS: Thematic analysis identified two main aspects for carers when contemplating the future-when they are unable to care in the short term or long term if they die or can no longer manage. Themes included the following: the impact of age, health conditions and relationships on future planning; anxiety about future care; carers' ambivalence and challenges in broaching the subject; interventions that might help older carers talk about and plan for the future of those they care for. CONCLUSIONS: Services need to be open to talking about this difficult topic. Our findings suggest that frank discussions about when older carers cannot care and having plans in place, whether these are financial or address other practical issues, makes it easier for all concerned. However, this issue is not easily broached and its timing and ways to access this support must be carefully and individually gauged. Future research with more diverse demographic groups is needed to improve understanding of these carers' perspectives. Research is also needed to develop interventions to support older carers to talk about and plan for the future.

A qualitative study of older informal carers' experiences and perceptions of their caring role.

BACKGROUND AND AIMS: Unpaid family carers, or caregivers as they are also known, often play a vital role in supporting others with illness or disability living in the community. Overall numbers of carers are growing but numbers of older carers are increasing particularly rapidly as populations age worldwide. However, little research has focused on this important older group. This qualitative study therefore investigated older carers' experiences and their perceptions of their role. METHODS: Five digitally recorded focus groups with carers from Greater London were undertaken. Recordings were transcribed and analysed thematically. FINDINGS: Forty-four carers aged 70-87 years participated. Most were female and two-thirds were spouses or partners. Overall, the carers thought their experiences were similar to those of younger adult carers and included both satisfying and challenging facets. However, they thought that some of the more negative aspects of the role were more difficult for older carers. Their own declining physical and emotional health and strength were seen as making it harder to access support and maintain social contacts. Loneliness both outside and within relationships featured prominently and was perceived as especially significant for housebound carers and when caring for someone with dementia. Many of these older carers also worried about the future when they might no longer be able to be a carer due to their own ill-health or death. CONCLUSIONS: Older carers find their role challenging and future investigations should focus on identifying means of reducing their isolation and supporting them with planning for the future.

Experiences and support needs of older carers: A focus group study of perceptions from the voluntary and statutory sectors.

OBJECTIVES: Older informal carers play a vital, growing role in supporting others with long-term health conditions but their support needs and experiences are poorly understood. The aim of this study was to explore the perceptions of volunteers and professionals of the experiences and support needs of older carers (aged 70+ years). METHODS: Thirty-five volunteers and professionals working with older carers in the voluntary and statutory sectors participated in a series of focus groups in outer London, United Kingdom. Groups were audio recorded, transcribed and subjected to thematic analysis. FINDINGS: Five main themes were identified. These included participants' perceptions of older carers' ambivalence about asking for support, their multiple losses, often restricted lives, social isolation and loneliness and concerns for their loved ones when they can no longer care. Overall, these themes are similar to those reported for adult carers in general but older carers' experiences were regarded as more challenging primarily because of their pride, attitudes to caring and because of their age, their own health was often declining making the physical aspects of caring and leaving their homes more difficult. Concerns about the future are thought to be particularly important for older carers of adult children with disabilities because they expect to be outlived by their children, although similar concerns were voiced by spouses of partners living with dementia. CONCLUSIONS: Professionals and volunteers need to consider these additional challenges for older carers. Support with accessing services, for example from the voluntary sector, is important as is future exploration of how to support older carers in planning for the future care for their loved ones is needed.

The human dimensions of post-stroke homecare: experiences of older carers from diverse ethnic groups.

PURPOSE: Very little is known about how older people from black and minority ethnic (BME) groups caring for someone after a stroke access and engage with social care services. This paper explores both the experiences of carers whose relative was receiving social care services in their own home and the value of a theory of humanising care to understand and explain these experiences. METHOD: Semi-structured interviews were undertaken with 50 carers from five different ethnic groups: Asian Indian, Asian Pakistani, Black African, Black Caribbean and White British. Data were thematically analysed within a phenomenological framework. RESULTS: Five interacting themes emerged: communication and bureaucracy; time and timing; communication and rapport building; trust and safety; humanity and the human dimensions of care. Many of the experiences could be interpreted within a conceptual framework of humanising care underpinned by eight interacting dimensions of what it means to be treated as an individual and a human. CONCLUSIONS: Carers from BME and White British groups share many experiences of homecare although language and cultural difference may exacerbate common pressures and stresses. The framework for humanising care is a useful tool to evaluate aspects of homecare that are responsive to dignity and diversity. Implications for Rehabilitation Explicitly identifying, describing and valuing the human dimensions of care may support services in responding appropriately to homecare users from black minority ethnic communities as well as those from white majority groups. Unresponsive services and poor communication may lead to loss of trust with care agencies and undermine BME carers' sense of entitlement and competence in engaging with homecare services. Care worker continuity investing time in building relationships and care worker familiarity is important to many families who access social care services.

Reciprocity, resources, and relationships: new discourses in healthcare, personal, and social relationships.

Dominant cultural narratives of disability and rehabilitation tend to emphasize a unilateral perspective on need, dependency, and giving. Yet, making a contribution and participating in a two-way process of giving are common features of strong, healthy relationships and community belonging. This paper will explore reciprocity within social relationships and link aspects of making a contribution and taking part to the concept of Active Citizenship. Drawing on theory and research from sociology, psychology, rehabilitation, ageing, and disability studies, the paper will discuss issues for researchers, therapists, support workers, and friends in building more equal relationships between people with communication disability and those they live and work with. Through descriptions of two community building projects developed by people with aphasia at Connect- the communication disability network in the UK, the paper will illuminate what active citizenship means and ways collaborative, user-led projects can promote social capital and leadership by people who live with a communication disability. This is positioned as an alternative to models and mindsets which risk perpetuating careers for people as passive recipients of care and support. The paper concludes by identifying practical implications for clinicians in promoting reciprocal relationships with and between adults with communication impairments.