A New Process Model for Relationship-Centred Shared Decision-Making in Physical Medicine and Rehabilitation Settings.

INTRODUCTION: We present a relationship-centred shared-decision-making (RCSDM) process model to explicate factors that shape decision-making processes during physical medicine and rehabilitation (PMR) encounters among patients, their care partners and practitioners. Existing shared decision-making (SDM) models fall short in addressing the everyday decisions routinely made regarding persons with chronic disabilities who require high levels of support, their care partners and rehabilitation practitioners. In PMR, these everyday decisions are small scale, immediate and in service to a larger therapeutic goal. They can be thought of as micro-decisions and involve multiple practitioners, care partners and patients. How micro-decisions are made in this context is contingent on multiple roles and relationships among these relevant parties. Our model centres on micro-decisions among patients, their care partners and practitioners based on our disorders of consciousness (DoC) research. METHODS: To develop our model, we examined peer-reviewed literature in SDM in PMR, chronic disability and person-centeredness; formed collaborations and co-created our constructs with rehabilitation practitioners and with care partners who have lived experience of caring for persons with DoC; analysed emerging empirical data and vetted early versions with expert scientific and clinical audiences. Our model builds from the core tenets of relational autonomy, and scholarship and activism of disability advocates. FINDINGS: Our model conceptualizes four non-hierarchical levels of analysis to understand the process of micro-decision-making in chronic disability and medical rehabilitation: social forces (historical and sociological); roles and relationships (multiple and intersecting); relational dimensions (interactional and contextual) and micro-decision moments (initiation, response and closure). DISCUSSION: Relationships among patients, their care partners and practitioners are the intersubjective milieu within which decisions are made. Our conceptual model explicates the process of micro-decision-making in PMR. PATIENT OR PUBLIC CONTRIBUTION: Care partners (or caregivers) and rehabilitation practitioners are active members of our team. We work together to develop research projects, collect, analyse and disseminate data. The conceptual model we present in this manuscript was co-created-input from care partners and practitioners on previously collected data became the impetus to develop the RCSDM process model and share co-authorship in this manuscript.

Characteristics Associated with Relationship-Centred and Task-Focused Mealtime Practices in Older Adult Care Settings.

Purpose: To assess care home and staff characteristics associated with task-focused (TF) and relationship-centred care (RCC) mealtime practices prior to the COVID-19 pandemic.Methods: Staff working in Canadian and American care homes were invited to complete a 23-item online survey assessing their perceptions of mealtime care, with one item assessing 26 potential care practices from the Mealtime Relational Care Checklist (relationship-centred = 15; task-focused = 11) reported to occur in the home prior to the pandemic. Multivariate linear regression evaluated staff and care home characteristics associated with mealtime practices.Results: Six hundred and eighty-six respondents completed all questions used in this analysis. Mean TF and RCC mealtime practices were 4.89 ± 1.99 and 9.69 ± 2.96, respectively. Staff age was associated with TF and RCC practices with those 40-55 years reporting fewer TF and those 18-39 years reporting fewer RCC practices. Those providing direct care were more likely to report TF practices. Dissatisfaction with mealtimes was associated with more TF and fewer RCC practices. Homes that were not making changes to promote RCC pre-pandemic had more TF and fewer RCC practices. Newer care homes were associated with more RCC, while small homes (≤49 beds) had more TF practices.Conclusions: Mealtime practices are associated with staff and home factors. These factors should be considered in efforts to improve RCC practices in Canadian homes.

It takes three to tango: An ethnography of triadic involvement of residents, families and nurses in long-term dementia care.

BACKGROUND: Researchers often stress the necessity and challenge of integrating the positionings of residents, family members and nurses in order to realize each actor's involvement in long-term dementia care. Yet most studies approach user and family involvement separately. AIM: To explain how productive involvement in care provision is accomplished in triadic relationships between residents, family members and nurses. METHODS: An ethnographic study of identity work, conducted between 2014 and 2016 in a Dutch nursing home. FINDINGS: We identify four ideal-typical identity positionings performed by nurses through daily activities. The findings reveal how their identity positionings were inseparable from those of the residents and family members as they formed triads. Congruent, or 'matching', identity positionings set the stage for productive involvement. Our systematic analysis of participants' identity work shows how-through embedded rights and responsibilities-their positionings inherently shaped and formed the triadic types and degrees of involvement observed within these relationships. DISCUSSION AND CONCLUSION: This study both unravels and juxtaposes the interrelatedness of, and differences between, the concepts of user and family involvement. Accordingly, our findings display how residents, family members and nurses-while continuously entangled in triadic relationships-can use their identity positionings to accomplish a variety of involvement activities. To mirror and optimize the implementation of user and family involvement, we propose a rights-based and relational framework based on our findings. PATIENT OR PUBLIC CONTRIBUTION: Conversations with and observations of residents; feedback session with the Clients' Council.

How do clients and (In)formal caregivers experience quality of home care? A qualitative approach.

AIM: To explore and understand the views of clients and formal and informal caregivers about the experienced quality of home care for older people. DESIGN: A descriptive qualitative study was conducted using individual interviews. METHODS: Six home care clients, four formal and six informal caregivers were recruited from two Dutch home care organizations. Individual, semi-structured interviews took place between April - November 2018. The INDividually EXperienced QUAlity of Long-term care framework was used to guide data collection and content analyses. RESULTS: The analyses revealed several important attributes contributing to experienced quality of home care such as a preferred small number of caregivers, perceived sufficient time for care provision and a caring atmosphere facilitating open communication and humour. Participants indicated that care routines fitting with the care receiver's former way of living were important. A more 'close' personal care relationship related to trust, openness and empathy was preferred over a more 'detached' professional care relationship. CONCLUSION: This study identified a wide range of attributes related to experienced quality of care from the perspectives of clients and formal and informal caregivers in home care. IMPACT: Care providers are being challenged to structurally assess individual experienced quality of home care. This study underlines the importance of incorporating care preferences and experiences throughout the care process from a relationship-centred care approach. Relevant care measures and outcomes should be determined to gain insight and further improve individual care provision.

Mixed methods developmental evaluation of the CHOICE program: a relationship-centred mealtime intervention for long-term care.

BACKGROUND: Mealtimes are important to quality of life for residents in long-term care (LTC). CHOICE (which stands for Connecting, Honouring dignity, Offering support, supporting Identity, Creating opportunities, and Enjoyment) is a multi-component intervention to improve relationship-centred care (RCC) and overall mealtime experience for residents. The objective of this developmental evaluation was to determine: a) if the dining experience (e.g. physical, social and RCC practices) could be modified with the CHOICE Program, and b) how program components needed to be adapted and/or if new components were required. METHODS: A mixed methods study conducted between April-November 2016 included two home areas (64 residents; 25 care staff/home management) within a single LTC home in Ontario. Mealtime Scan (MTS), which measures mealtime experience at the level of the dining room, was used to evaluate the effectiveness of CHOICE implementation at four time points. Change in physical, social, RCC dining environment ratings and overall quality of the mealtime experience over time was determined with linear mixed-effects analyses (i.e., repeated measures). Semi-structured interviews (n = 9) were conducted with home staff to identify what components of the intervention worked well and what improvements could be made. RESULTS: Physical and overall mealtime environment ratings showed improvement over time in both areas; one home area also improved social ratings (p < 0.05). Interviews revealed in-depth insights into the program and implementation process: i) Knowing the context and culture to meet staff and resident needs; ii) Getting everyone on board, including management; iii) Keeping communication lines open throughout the process; iv) Sharing responsibility and accountability for mealtime goals and challenges; v) Empowering and supporting staff's creative mealtime initiatives. CONCLUSIONS: This developmental evaluation demonstrated the potential value of CHOICE. Findings suggest a need to: extend the time to tailor program components; empower home staff in change management; and provide increased coaching.

Supporting staff to care for people with dementia who experience distress reactions.

This article outlines the development of distress reaction training in a large care home charity, provided by directly employed My Home Life Admiral nurses, who are mental health nurses specialising in dementia. Reference is made to the limitations of a person-centred approach to care, and the importance of relationship-centred care, which underpins the My Home Life social movement for quality improvement in care homes. The authors argue that relationship-centred care is a more helpful approach to improve the lived experience and wellbeing of residents, relatives and staff. Potentially, it might also help to address high staff turnover in the care home sector.

Students' experiences with a hybrid learning environment in nursing homes: A qualitative study.

AIM: The aim of this study is to explore how students experience learning in a hybrid learning environment in a nursing home setting and their perceptions of relationship-centred care. BACKGROUND: Nursing homes are undergoing a culture shift from task-centred care to person- and relationship-centred care, requiring a different approach to how nursing home staff work and are educated. Hybrid learning environments aim to educate professionals who continuously work on their professional development by integrating and merging learning and working to facilitate the culture shift. DESIGN: An exploratory qualitative study design was used. The setting were nursing home wards organised according to a hybrid learning environment located in the Netherlands. Participants were students in two-year training for nurse assistants, three-year training for certified nurse assistants, or four-year training for vocationally trained registered nurses. Data were collected through semi-structured interviews and focus groups. Data were analysed using direct content analysis. RESULTS: Analysis revealed three themes regarding how students experienced learning in the hybrid learning environment: 1) design of the learning process, 2) disconnection between working and learning and 3) learning resources. Regarding how learning in the hybrid learning environment influences students' perceptions of relationship-centred care analyses revealed two themes: 1) recognising the essence of relationship-centred care and 2) overstaffing and student-resident interaction. CONCLUSIONS: The hybrid learning environment in a nursing home setting remains underdeveloped. By considering some improvement points (e.g., clarity of the role of work supervisor and students' awareness of learning while executing daily tasks), the hybrid learning environment can promote a shift from working task-centred to working relationship-centred. Additionally, students must grasp the essence of the concept of relationship-centred care and need support in developing reflection skills to provide it.

Culture Change in Long-Term Care-Post COVID-19: Adapting to a New Reality Using Established Ideas and Systems.

The response to the COVID-19 pandemic in long-term care (LTC) has threatened to undo efforts to transform the culture of care from institutionalized to de-institutionalized models characterized by an orientation towards person- and relationship-centred care. Given the pandemic's persistence, the sustainability of culture-change efforts has come under scrutiny. Drawing on seven culture-change models implemented in Canada, we identify organizational prerequisites, facilitatory mechanisms, and frontline changes relevant to culture change that can strengthen the COVID-19 pandemic response in LTC homes. We contend that a reversal to institutionalized care models to achieve public health goals of limiting COVID-19 and other infectious disease outbreaks is detrimental to LTC residents, their families, and staff. Culture change and infection control need not be antithetical. Both strategies share common goals and approaches that can be integrated as LTC practitioners consider ongoing interventions to improve residents' quality of life, while ensuring the well-being of staff and residents' families.

Multi-Level Factors Associated with Relationship-Centred and Task-Focused Mealtime Practices in Long-Term Care: A Secondary Data Analysis of the Making the Most of Mealtimes Study.

Mealtimes in long-term care (LTC) can reinforce relationships between staff and residents through relationship-centred care (RCC) practices; however, meals are often task-focused (TF). This cross-sectional study explores multi-level contextual factors that contribute to RCC and TF mealtime practices. Secondary data from residents in 32 Canadian LTC homes were analyzed (n = 634; mean age 86.7 ± 7.8; 31.1% male). Data included resident health record review, standardized mealtime observation tools, and valid questionnaires. A higher average number of RCC (9.6 ± 1.4) than TF (5.6 ± 2.1) practices per meal were observed. Multi-level regression revealed that a significant proportion of variation in the RCC and TF scores was explained at the resident- (intraclass correlation coefficient [ICC]RCC = 0.736; ICCTF = 0.482), dining room- (ICCRCC = 0.210; ICCTF = 0.162), and home- (ICCRCC = 0.054; ICCTF = 0.356) levels. For-profit status and home size modified the associations between functional dependency and practices. Addressing multi-level factors can reinforce RCC practices and reduce TF practices.

Facilitators of person and relationship-centred care in nursing.

AIMS: To provide an expert overview on the current state of evidence as it relates to person and relationship-centred care. DESIGN: Review and commentary. METHODS: The paper was prepared in order to contribute to a Consensus Development Project. It is based upon a scoping review with additional theoretical material used to supplement the narrative. The content is limited to that person and relationship-centred literature as it relates to nursing practice and policy. RESULTS: There is compelling evidence in favour of nurses pursuing person and relationship-centred policies and practices. Organizational and individual factors contribute to the successful implementation of person and relationship-centred care. These include conditions that enable nurses to provide high-quality care (resources, clinical supervision and security) and include training and development, a biographical approach to care and those care environments centred on innovation and person-centred care processes.

Working in a Dutch nursing home during the COVID-19 pandemic: Experiences and lessons learned.

AIMS: To gain insight into how direct care staff in Dutch nursing homes experienced work during the COVID-19 pandemic. DESIGN: A qualitative study consisting of semi-structured, face-to-face focus groups was conducted using "the active dialogue approach". METHODS: Participants (n = 29) were care staff from four care teams at Dutch nursing homes. Teams were selected based on the number of COVID-19 infections amongst residents. Data were analysed with conventional content analysis. RESULTS: Themes emerging from the data were the loss of (daily) working structure, interference between work and private life for direct care staff, the importance of social support by the team and a leader, and the effects on relationship-centred care of the measures. Results offer concrete implications for similar situations in the future: psychological support on-site; autonomy in daily work of care staff; an active role of a manger on the work floor and the importance of relationship-centred care.

Situating Eden-Culture change in residential aged care: A scoping review.

OBJECTIVE: This review explored the knowledge of the Eden Alternative [Eden] as a well-being model for aged care and the current research of relationship-centred care in a residential setting to identify gaps in the literature. METHODS: The search commenced in July 2017 and was updated in January 2020. Eight electronic databases were systematically searched for peer-reviewed studies published in English between 2000 and 2020. The search revealed 13 papers for final inclusion. RESULTS: The Eden model has the potential to reduce loneliness, helplessness and boredom in older people. Implementation requires committed leadership and the inclusion of residents, families and staff in decision-making. CONCLUSIONS: There remain gaps in the empirical evidence of the benefit of the Eden model. The challenge is for researchers to provide rigorous study design that can evidence well-being outcomes for residents with complex needs.

Meals on wheels services and the food security of older people.

In recent years, Meals on Wheels (MoW) services have been in a state of decline as austerity policies have become entrenched. However, this decline is occurring with little knowledge of the impact withdrawal of MoW services has on the health and well-being of those who use them. The pandemic has raised awareness of precarity and vulnerability in relation to food that affects many people in the UK and other Westernised countries and this provides further context for the analysis presented. This paper presents findings of a mixed methods ethnographic study drawing on qualitative interviews and visual methods underpinned by social practice theory to explore the household food practices of older people receiving MoW services. Interviews were conducted with 14 older people receiving MoW, eight MoW staff delivering MoW services in the east of England and one expert. The Covid-19 pandemic interrupted the study, and once the first lockdown began visits to the homes of older people were terminated and the remaining interviews were undertaken by telephone. The study found that a number of threats accumulated to change food practices and moved people towards vulnerability to food insecurity. Threats included difficulty accessing food and cooking due to sensory and physical challenges. The MoW service increased participants' coping capacity. As well as benefiting from the food provided, the relational aspect of the service was important. Brief encounters between MoW staff built caring relationships that developed over time to ensure older people felt valued and cared for. The study demonstrates how MoW services make a positive contribution to food practices, supporting vulnerable adults to continue living well in their own homes and protecting them from food insecurity and ill-being. Local authorities looking to make cost savings through ending MoW services should consider the impact this would have on the well-being of older residents.

Developing the Senses Framework to support relationship-centred care for people with advanced dementia until the end of life in care homes.

People with advanced dementia living in care homes can experience social death before their physical death. Social death occurs when a person is no longer recognised as being an active agent within their relationships. A shift is required in how we perceive people with advanced dementia so that the ways they continue to be active in their relationships are noticed. Paying attention to embodied and interembodied selfhood broadens the scope and opportunities for relationships with people with advanced dementia, acting as a counter to social death. This has the potential to improve the quality of care, including end of life care, of people with advanced dementia in care homes. This study examined the role of embodied and interembodied selfhood within care-giving/care-receiving relationships in a specialist dementia care home. Empirical findings and their implications for the development of relationship-centred care and the Senses Framework in care homes are discussed.

'They rush you and push you too much and you can't really get any good response off them': A qualitative examination of family involvement in care of people with dementia in acute care.

AIM: To explore the role and needs of the family carer across different acute care contexts and their level of involvement in the care of their relative with dementia in this setting. METHODS: A pragmatic, exploratory-descriptive qualitative approach. A convenience sample of 30 family carers across three sites completed semi-structured interviews. RESULTS: Family carers wanted to be involved in the acute care of their family member with dementia. They acknowledged the importance of a central source of information, educated staff, guidelines on roles and processes, and positive communication, as well as respect from staff for the carer's knowledge of the older person and their needs. They also highlighted the need for medical staff to discuss with them the family member's treatment and care. CONCLUSION: There is a need for family-focused interventions to improve communication and involvement of family in the care of family members with dementia in the acute setting.

Dignity and care for people with dementia living in nursing homes.

This article presents and discusses findings from a qualitative study on how the dignity of patients with dementia is preserved or harmed when they live in a nursing home. The results build on participant observation in two nursing home wards, combined with qualitative interviews with seven relatives of patients with dementia. The most important issue for relatives was that their family member with dementia was confirmed as a relational human being. However, relatives experienced lack of resources and task-centred care as threats to confirming, relational care and to patients' dignity. Findings from participant observations confirmed this. In this article, we argue that care which focuses on the residents' personhood, combined with a relational focus, is of great importance in maintaining the dignity of people with dementia living in nursing homes.

The personal development tutor role: an exploration of student and lecturer experiences and perceptions of that relationship.

This exploratory study formed part of the Leadership in Compassionate Care Programme (LCCP) that considered embedding the principles of person-centred compassionate care within an undergraduate nursing curriculum. Currently, there is a lack of literature regarding compassionate care in relation to the student-personal development tutor (PDT) relationship. The aim of the study was to explore the current personal development tutor role, within a pre-registration adult nursing programme, in relation to the support provided to students by PDTs and from this, establish what was important in the role from the student and lecturer perspectives, within the context of the LCCP. A qualitative approach utmilising participant interviews was employed. Six undergraduate nursing students on a Bachelor of Nursing adult programme and five PDTs participated in the study and Emotional Touchpoint technique was used to elicit participant experiences. Data were analysed using an adapted version of the Senses Framework, originally proposed by Nolan et al. (2006). The results demonstrate the importance that students and their PDTs attach to the relationship and how elements of care arising from the Senses Framework are fundamental to developing and sustaining this relationship. Further, it is apparent that role modelling in relation to care is considered an important element of the PDT role which has relevance to nurse education and practice. In light of these findings a range of strategies are proposed to enhance the PDT relationship by utilising a modified version of the Senses Framework as a model for PDT and student interaction.

Developing compassion through a relationship centred appreciative leadership programme.

BACKGROUND: Recent attention in health care focuses on how to develop effective leaders for the future. Effective leadership is embodied in relationships and should be developed in and with staff and patients. This paper describes development, implementation and evaluation of an appreciative and relationship centred leadership programme carried out with 86 nursing staff covering 24 in-patient areas within one acute NHS Board in Scotland. AIM OF LEADERSHIP PROGRAMME: The aim of the programme was to support staff to work together to develop a culture of inquiry that would enhance delivery of compassionate care. THEORETICAL UNDERPINNINGS: The 12 month Leadership Programme used the principles of appreciative relationship centred leadership. Within this framework participants were supported to explore relationships with self, patients and families, and with teams and the wider organisation using caring conversations. STRUCTURE OF PROGRAMME: Participants worked within communities of practice and action learning sets. They were supported to use a range of structured tools to learn about the experience of others and to identify caring practices that worked well and then explore ways in which these could happen more of the time. METHODS: A range of methods were used to evaluate impact of the programme including a culture questionnaire and semi structured interviews. Immersion crystallisation technique and descriptive statistics were used to analyse the data. FINDINGS: Key themes included; enhanced self-awareness, better relationships, greater ability to reflect on practice, different conversations in the workplace that were more compassionate and respectful, and an ethos of continuing learning and improvement. CONCLUSIONS: The programme supported participants to think in different ways and to be reflective and engaged participants rather than passive actors in shaping the cultural climate in which compassionate relationship centred care can flourish. Multidisciplinary programmes where the process and outcomes are explicitly linked to organisational objectives need to be considered in future programmes.

Caring about caring: developing a model to implement compassionate relationship centred care in an older people care setting.

AIM: This study actively involved older people, staff and relatives in agreeing a definition of compassionate relationship-centred care and identifying strategies to promote such care in acute hospital settings for older people. It was a major component of a three year programme (the Leadership in Compassionate Care Programme, LCCP) seeking to integrate compassionate care across practice and educational environments. BACKGROUND: Compassionate caring and promoting dignity are key priorities for policy, practice and research worldwide, being central to the quality of care for patients and families, and job satisfaction for staff. Therapeutic relationships are essential to achieving excellence in care but little is known about how to develop and sustain such relationships in a culture that increasingly focuses on throughput and rapid turnover. APPROACH AND METHODS: The study used appreciative inquiry and a range of methods including participant observation, interviews, story telling and group discussions to actively engage older people, relatives and staff. A process of immersion crystallization was used to analyze data with staff as co-analysts. FINDINGS: The study adds considerably to the conceptualization of compassionate, relationship-centred care and provides a model to aid staff deliver such care in practice, based on 'appreciative caring conversations' that enable all parties to gain two forms of 'person and relational knowledge' about 'who people are and what matters to them' and 'how people feel about their experience'. Such knowledge enables staff, patients and carers to 'work together to shape the way things are done'. The study generated a model called the 7 'C's that captures in detail the factors necessary to promote 'appreciative caring conversations'. CONCLUSIONS AND IMPLICATIONS: The study demonstrates that engaging in 'appreciative caring conversations' promotes compassionate, relationship-centred care but that these conversations involve practitioners taking risks. Such 'relational practices' must therefore be valued and accorded status. Staff require appropriate support, facilitation and strong leadership if these practices are to flourish.