Relationship-centered Care Research Articles

Doing Relationship-Centred Dementia Care: Learning from Each Other for Better Dementia Support by David I.J. Reid (2021)

Doing Relationship-Centred Dementia Care: Learning from Each Other for Better Dementia Support by David I.J. Reid (2021)

Experiences and needs of women in vulnerable situations receiving additional interventions in maternity care: a qualitative study

BackgroundTailoring an intervention to the needs and wishes of pregnant women in vulnerable situations (e.g., socioeconomic disadvantages) can reduce the risk of adverse outcomes and empower these women. A relatively high percentage of pregnant women in the North of the Netherlands are considered vulnerable to adverse pregnancy outcomes because of their low socioeconomic status and the intergenerational transmission of poverty. In order to improve perinatal and maternal health, next to standard prenatal care, various interventions for pregnant women in vulnerable situations have been developed. We do not know to what extent these additional interventions suit the needs of (pregnant) women. Therefore, the aim of this study is to gain insight into the experiences and needs of women in vulnerable situations who receive additional maternity care interventions in the Northern Netherlands.MethodsQualitative research was performed. We used a phenomenological framework, which is geared towards understanding people’s experiences in the context of their everyday lives. In-depth semi-structured interviews were conducted with 17 pregnant women in vulnerable situations living in the Northern Netherlands. A thematic analysis was carried out.ResultsWe found three themes that reflect the experiences and needs of pregnant women in vulnerable situations in relation to the intervention they receive. These themes relate to the care provided by health professionals, to the impact of being offered an intervention, and to practical issues related to receiving an additional intervention. We found that the needs of pregnant women in vulnerable situations who received an additional maternity care intervention varied. This variation in needs was mainly related to practical issues. Women also expressed common needs, namely the desire to have control over their situation, the wish to receive tailor-made information about the intervention, and the wish for the intervention to be specifically tailored to their circumstances.ConclusionsLiving in vulnerable situations and being offered additional care evoked diverse reactions and emotions from pregnant women. We recommend that health professionals ensure open and clear communication with women, that they ensure continuity of care and relationship-centered care, and that they become aware of the process of stigmatization of women in vulnerable situations.

Promoting relationship-centred care skills and attitudes: study protocol for the development and ef-fectiveness assessment of a training program for health professionals

Background: Patient-centred and relationship-centred care (RCC) are considered crucial for therapeutic success. However, due to time pressure and fatigue, among other constraints, health professionals tend to act based on implicit directive (i.e., more authoritative) attitudes, common to the traditional biomedical approach to care. Despite current agreement on the importance of the relationship established between patients and health professionals, limited understanding exists regarding how to promote health professionals’ implicit attitudes, in line with the concept of RCC.Goals: To develop and evaluate the effectiveness of a sustainable short-term training program to promote awareness and endorsement of attitudes and values aligned with RCC in health professionals.Methods: The development of the training program to promote RCC attitudes will be supported by literature reviews and a Delphi panel to define its structure, format, and contents. The effectiveness assessment of the RCC training program will entail a 2-arms randomized controlled trial, over three moments: at baseline, immediately after the training, and two months afterward. For the effectiveness assessment, implicit and explicit attitudes regarding RCC will be evaluated, considering the sociodemographic and professional characteristics of the participants. An implicit association test (IAT) targeting RCC attitudes will be specifically developed and validated for the Portuguese population to be applied in the effectiveness assessment process. Intention-to-treat and per-protocol statistical analyses will be performed for primary and secondary outcomes, respectively.Discussion: Integrating RCC-related content in health professionals’ education programs may promote attitudes more aligned with RCC and fitting with the participatory healthcare paradigm.

A qualitative systematic review of the role of families in supporting communication in people with dementia.

Cognitive-communication difficulties are often associated with dementia and can impact a person's ability to participate in meaningful conversations. This can create challenges to families, reflecting the reality that people living with dementia rarely have just one regular conversation partner, but interact with multiple family members. To date, there is limited evidence of the impact of changes in communication patterns in families. A family systems approach, with foundations in psychology, can be used to explore the impact of communication difficulties on multiple different family members, including the person living with dementia and potential coping strategies used by individuals, together with the family as a whole. A systematic review of primary qualitative research was conducted to identify and examine research exploring communication and interaction within families living with dementia. Studies were identified through a comprehensive search of major databases and the full-text articles were subject to a quality appraisal. We conducted a thematic analysis on the literature identified to consider the role of families in supporting communication for people with dementia. The searches identified 814 possible articles for screening against the eligibility criteria. Nine articles were included in the final review. Three major themes emerged from the analysis of the included studies: (1) 'identities changing' reflected how interactions within the family systems impacted on identities; (2) 'loss' reflected the grief experienced by families due to changes in communication; and (3) 'developing communication strategies' highlighted strategies and approaches that families affected by dementia may use organically to engage in meaningful interactions and maintain connection. Only one study explicitly used a family systems approach to understand how families manage the changes in interaction resulting from dementia. The findings may usefully inform the clinical practice of speech and language therapists in terms of communication strategies and coping mechanisms that may be advised to facilitate connection in families living with dementia. Further research using a family systems approach to exploring communication in dementia may help to support the implementation of family-centred practice as recommended in policy. What is already known on the subject There is increasing recognition of the impact of dementia on whole families and the need for family-centred interventions to enhance quality of life. However, much of the research to date that explores communication within families affected by dementia examines interaction between dyads, largely overlooking the roles and skills of other familial communication partners. To the authors' knowledge, there has been no previous review of the literature using a family systems approach, which has the potential to inform clinical practice of those working in dementia care. What this paper adds to existing knowledge The review examines and understands what is known about the approaches used by families affected by communication changes resulting from dementia to preserve connection. It collates the evidence from qualitative studies examining approaches and strategies used by individual conversation partners, including people with dementia, as well as the family system as a whole, to facilitate meaningful interactions, and proposes recommendations for clinicians working in this field. Furthermore, we consider the potential benefits of using a family systems approach to understand the context of people living with dementia and how this could enhance communication, personhood and well-being. What are the potential or actual clinical implications of this work? This review highlights practical conversation strategies and interactional approaches that may serve to enhance communication and preserve relationships between people with dementia and their family members. Such techniques have the potential to be advised by Speech and Language Therapists working in dementia care as part of tailored, relationship-centred care and support that they provide.

Building a Relationship-Centered Culture in Healthcare: An Organizational Framework for Transformation

This article presents a change management framework for establishing a relationship-centered care (RCC) communication program for hospital systems and provides preliminary evidence regarding the value of a program that places the physician–patient relationship as central to care delivery. The four-step change management framework provides strategic behaviors leaders can use to navigate the cultural transformation process. Preliminary data suggest that adopting this transformational model may increase patient satisfaction and physician wellness.

Ways Forward in Preventing Severe Maternal Morbidity and Maternal Health Inequities: Conceptual Frameworks, Definitions, and Data, from a Population Health Perspective.

Ways Forward in Preventing Severe Maternal Morbidity and Maternal Health Inequities: Conceptual Frameworks, Definitions, and Data, from a Population Health Perspective.

Cultural competence and safety in Circumpolar countries: an analysis of discourses in healthcare

ABSTRACT Circumpolar Indigenous populations continue to experience dramatic health inequities when compared to their national counterparts. The objectives of this study are first, to explore the space given in the existing literature to the concepts of cultural safety and cultural competence, as it relates to Indigenous peoples in Circumpolar contexts; and second, to document where innovations have emerged. We conducted a review of the English, Danish, Norwegian, Russian and Swedish Circumpolar health literature focusing on Indigenous populations. We include research related to Alaska (USA); the Yukon, the Northwest Territories, Nunavik and Labrador (Canada); Greenland; Sápmi (northmost part of Sweden, Norway, and Finland); and arctic Russia. Our results show that the concepts of cultural safety and cultural competence (cultural humility in Nunavut) are widely discussed in the Canadian literature. In Alaska, the term relationship-centred care has emerged, and is defined broadly to encompass clinician-patient relationships and structural barriers to care. We found no evidence that similar concepts are used to inform service delivery in Greenland, Nordic countries and Russia. While we recognise that healthcare innovations are often localised, and that there is often a lapse before localised innovations find their way into the literature, we conclude that the general lack of attention to culturally safe care for Sámi and Greenlandic Inuit is somewhat surprising given Nordic countries’ concern for the welfare of their citizens. We see this as an important gap, and out of step with commitments made under United Nations Declarations on the Rights of Indigenous Peoples. We call for the integration of cultural safety (and its variants) as a lens to inform the development of health programs aiming to improve Indigenous in Circumpolar countries.

Discharge summaries provided to owners of pets newly diagnosed with cancer exceed recommended readability levels.

To analyze the readability of discharge summaries distributed to owners of pets newly diagnosed with cancer. 118 discharge summaries provided to pet owners following initial consultation. A database search identified records of new patients that had been presented to the North Carolina State Veterinary Hospital medical oncology service between June 2017 and January 2019. Owner-directed portions of the summaries provided at the time of discharge were copied and pasted into a document and stripped of all identifying information. Readability of summaries was assessed with the use of 2 previously established readability calculators: the Flesch-Kincaid Grade Level (FKGL) and Flesch Reading Ease (FRE) tests. Mean ± SD FKGL was 11.9 ± 1.1 (median, 11.9; range, 8.6 to 15.5; target ≤ 6), and the mean ± SD FRE score was 43 ± 5.9 (median, 42.7; range, 25.5 to 58.1; target ≥ 60). There were no significant differences in FKGL or FRE scores among discharge summaries for patients with the 4 most common tumor types diagnosed or the described treatment options. Ninety-three percent (110/118) of summaries were scored as difficult or very difficult to read. Owner-directed written information regarding a diagnosis of cancer at a single teaching hospital exceeded readability levels recommended by the American Medical Association and NIH and was above the average reading level of most US adults. Efforts to improve readability are an important component of promoting relationship-centered care and may improve owner compliance and patient outcomes.

Knowing-in-action that centres humanising relationships on stroke units: an appreciative action research study

AbstractBackground:Equal, collaborative and therapeutic relationships centred on the person affected by stroke are important for supporting recovery and adjustment. However, realising these relationships in hospital practice is challenging when there is increasing focus on biomedical needs and organisational pressures. Despite a body of evidence advocating for quality relationships, there remains limited research describing how to achieve this in clinical practice. This appreciative action research (AAR) study aimed to describe the processes involved in co-creating meaningful relationships on stroke units.Design and methods:An AAR approach was used to develop humanising relationship-centred care (RCC) within two hospital stroke units. Participants were staff (n = 65), patients (n = 17) and relatives (n = 7). Data generation comprised of interviews, observations and discussion groups. Data were analysed collaboratively with participants using sense-making as part of the AAR cyclical process. Further in-depth analysis using immersion crystallisation confirmed and broadened the original themes.Findings:All participants valued similar relational experiences around human connections to support existential well-being. The AAR process supported changes in self, and the culture on the stroke units, towards increased value being placed on human relationships. The processes supporting human connections in practice were: (i) sensitising to humanising relational knowing; (ii) valuing, reflecting and sharing relational experiences with others that co-created a relational discourse; and (iii) having the freedom to act, enabling human connections. The outcomes from this study build on existing lifeworld-led care theories through developing orientations for practice that support relational knowing and propose the development of RCC to include humanising values.

Down Syndrome Legislation in the U.S. and Italy: A Comparison

How do we guarantee dignity and quality of life to individuals with Down syndrome? If a family cannot commit to granting a dignified life, or if there are other health concerns at issue, how do we balance the right of the mother, parents, and unborn child? This article offers a comparative perspective of the disability legal framework in the U.S. and Italy, focusing on Down syndrome. In Italy, healthcare is public and universal, while in the United States healthcare is mostly privatized. In this context, in the U.S. people with mental and physical disabilities are particularly vulnerable due to the high costs of healthcare, stigma, and the need for additional advocacy. This work compares the Americans with Disabilities Act (ADA) in the U.S., the Legge 104/1992 in Italy, and the Convention on the Rights of Persons with Disabilities (CRPD) internationally. Numerous policy considerations impact the lives of individuals with Down syndrome, from conception to delivery, and from early childhood throughout development. There is a controversial legal debate concerning abortion if the fetus has an identified genetic abnormality. Additionally, once individuals with Down syndrome are born, how does the legal framework support these children and their families? Law and policy regarding access to care make a big difference in the quality of life of people with Down syndrome. At first glance, the standpoint of protecting and supporting a child with Down syndrome, and that of protecting the parents' right to terminate a pregnancy, might seem antithetical. However, they are, in fact, part of the same (difficult) conversation. By adopting a person-centered approach, paired with a relationship-centered care approach, we can pursue the holistic and humanistic ideals that our society aspires to achieve.

The "Senses Framework": A Relationship-Centered Approach to Coproducing Dementia Events in Order to Allow People to Live Well After a Dementia Diagnosis

Dementia is a progressive disorder that affects how the brain works, and in particular the ability to remember, think, and reason. It affects speech, mood, mobility, behavior, and how people perceive and respond to the world around them. Contemporary approaches to understanding dementia encourage society to think about how people can live well in their communities. These approaches focus on ensuring that people with dementia see the diagnosis not as the end of their life, but rather as the beginning of a new chapter of their life. This study explores how arts events specifically tailored for people with dementia can help those with a dementia diagnosis to live well after their diagnosis. In this study, we have undertaken qualitative research in the form of semistructured interviews with festival organizers and event managers in order to understand the value of arts festivals and events in the context of dementia care. In this article, we present areas of best practice within the Arts and Culture sector and offer recommendations for improvement in how festival and event managers make their arts events accessible and a positive experience for those living with dementia. The key theoretical contribution of this article is the proposition of a theoretical framework that explores dementia arts events as they relate to a palliative model on relationship-centered care for people living with dementia—the "Senses Framework"—and we apply this framework from social care in an arts events context.

Reimagining Nutrition Care and Mealtimes in Long-Term Care.

Poor food and fluid intake and subsequent malnutrition and dehydration of residents are common, longstanding challenges in long-term care (LTC; eg, nursing homes, care homes, skilled nursing facilities). Institutional factors like inadequate nutrition care processes, food quality, eating assistance, and mealtime experiences, such as staff and resident interactions (ie, relationship-centered care) are partially responsible and are all modifiable. Evidence-based guidelines on nutrition and hydration for older adults, including those living with dementia, outline best practices. However, these guidelines are not sector-specific, and implementation in LTC requires consideration of feasibility in this setting, including the impact of government, LTC home characteristics, and other systems and structures that affect how care is delivered. It is increasingly acknowledged that interconnected relationships among residents, family members, and staff influence care activities and can offer opportunities for improving resident nutrition. In this special article, we reimagine LTC nutrition by reframing the evidence-based recommendations into relationship-centered care practices for nutrition care processes, food and menus, eating assistance, and mealtime experience. We then expand this evidence into actions for implementation, rating these on their feasibility and identifying the entities that are accountable. A few of the recommended activities were rated as highly feasible (6 of 27), whereas almost half were rated moderate (12/27) and the remainder low (9/27) owing to the need for additional staff and/or expert staff (including funding), or infrastructure or material (eg, food ingredients) investment. Government funding, policy, and standards are needed to improve nutrition care. LTC home leadership needs to designate roles, initiate training, and support best practices. Accountability will result from enforcement of policies through auditing of practice. Further evidence on these desirable nutrition care and mealtime actions and their benefit to residents' nutrition and well-being is required.

Impact of virtual care on relationship centered care: Observations of a family physician

The COVID-19 pandemic propelled many physicians and their patients into an unfamiliar world of virtual care. This presentation is based on the perceptions of a family physician/ teacher/ researcher with 43 years of interest in, and promotion of, a strong doctor-patient relationship. It will describe a protocol that governed how tele-medicine and video-conferencing took place over nearly 18 months in his practice. It will then describe observed positive and negative impacts for the patients, their family members, the physician, and members of the family medicine health care team. Interpretation will be made about what such observations mean for the doctor-patient relationship.

Relationship-centered care in Canadian medial education

Relationship-centered care in Canadian medial education

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

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. 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. 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. 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.

Involving Persons with Dementia in Social Research: A Literature Review

Studies involving persons with dementia as research participants have increased over the years, due in part to an emphasis on patient and public involvement in health care and participatory action research. Recent studies indicate a growing trend toward engaging persons with dementia, not only as participants, but also as co-researchers. Further, studies involving persons with dementia as co-researchers and advisers have garnered increased attention due to the inclusion of this population’s unique perspectives and lived experiences. Theoretically, frameworks such as person-centered- and relationship-centered care, also influence and shape the research process. This literature review examines empirical research conducted over the past decade that reports the involvement of persons with dementia as research participants (“research on”) and co-researchers and advisers (“research with”). Among the 27 articles identified, 12 reported “research on,” and 15 reported “research with” persons with dementia. “Research on” targeted participants’ emotional expressions/responses, engagement in exercise/activities; social environment influences, and cognitive training; whereas “research with,” which was mostly qualitative, focused on co-researchers’ perspectives of and experiences with the research process; needs, priorities, and recommendations in research planning; partnering with persons with dementia on the design and development of research instruments, and the importance of critically evaluating the research process. Findings documenting research challenges, complexities, and ethical concerns are also discussed. Overall, findings demonstrate the feasibility of involving persons with dementia in a meaningful way and further affirms that including them as co-researchers is not only beneficial, but has the potential to enhance the entire research process.

Influencing factors and strategies to support communication between older adults with dementia and caregivers throughout the care trajectory

AbstractBackgroundCommunication is an essential aspect of life and caregiving. However it is often taken for granted although ccommunication between older adults with dementia and their carers is often extremely challenging. Effective communication is essential to provide relationship centered care and tailor care to patients needs.ObjectivesWe aimed to determine factors that influence communication in older adults’ with dementia and their caregivers’ and explored strategies to enhance communication that could be supportive throughout the care trajectory.Design and methodsFactors that impact communication between older adults with dementia and caregivers were determined by using a scoping review and included a thematic analysis of the literature. These determined factors were validated using a large variety of video observations and additional qualitative interviews (n=15). To determine strategies that could be beneficial to improve communication, communication strategies were determined. To determine these strategies existing literature of other expertise areas (including marketing and communication science) was used and think a‐loud sessions with experts were performed.ResultsThe scoping review revealed that factors that can affect caregivers' communication with older adults with dementia relate to the older adult, the caregiver and the context of the caregiving situation / environment, and the interactions between these factors. Observations confirmed that most influencing factors were related to the caregivers including for example non‐verbal behaviour. However contextual factors (e.g. organization of care, and care situation) were less observed although these may offer opportunities to enhance the communication. Strategies identified from other fields (f.i. social psychology and consumer behaviour research) were included for example compliance‐without‐pressure‐techniques.ConclusionsThis study gained important insight into influencing factors on communication between older adults with dementia and their caregivers. Strategies as ‘The‐foot‐in‐the‐door’, verbal mimicry and ‘The illusion of choice’ could support communication throughout the care trajectory and are provide useful insights, which are not always taken into consideration in current practice. This information can be used for developing solid interventions to support communication and enhance relationship centred care in accordance to the older adults needs.

Well-being in long-term care: an ode to vulnerability

In health care, well-being is considered to be composed of multiple interacting dimensions and to regard the subjective (affective and cognitive) evaluation of these dimensions. These dimensions are often referred to as physical, psychological, and social domains of life. Although there are various disease-specific and group-specific conceptual approaches, starting from a universal perspective provides a more inclusive approach to well-being. Indeed, universal approaches to well-being have striking overlaps with dementia-specific approaches. Although many initiatives have been launched to promote person-centered care and attention for well-being in recent decades, the current COVID pandemic showed that the primary focus in (Dutch) long-term care was still on physical health. However, a well-being perspective can be a central base of care: it is a means to include positive aspects, and it can be applied when addressing problems such as challenging behavior in the sense that both are about needs. Furthermore, providing care from this perspective is not only about the well-being of frail people and their loved ones but also about the well-being and needs of the involved professionals. Increasingly, research shows the importance of the quality of the resident-carer relationship, the carer’s behavior, and their well-being for improving the well-being of residents. Applying the care approaches ‘attentiveness in care’ and relationship-centered care can contribute to the well-being of all involved stakeholders as these uphold the reciprocity of care relationships and take the values and attitudes, but also the vulnerability of those involved, into account.

Impact of COVID-19 on Relationship-Centred Residential Dining Practices

Abstract This study describes changes in dining practices and provider perspectives on meal-related challenges due to the coronavirus disease (COVID-19) pandemic. An online survey was disseminated between July and September 2020 through stakeholder networks and social media with 1,036 respondents. Altered dining practices included residents eating in rooms (54.3%), spacing residents in common areas for meals (69.3%), and disposable dish use (44.9%). The most common mealtime challenges were reduced socializing opportunities at meals (29.3%), inadequate staffing (22.8%), reduced family/volunteer help (16.7%), and assisting residents to eat (10.5%). Many participants (72.2%) felt conflict balancing safety and relationship-centred care. Geographic region, home size, building age, respondent’s job title, pre-pandemic relationship-centred practices, and mealtime satisfaction, and some pandemic-initiated practices were associated with mealtime challenges and feeling conflicted in binary logistic regression analyses. Considering trade-offs between safety and relational aspects of mealtimes during the pandemic is crucial.

Facilitators of person and relationship-centred care in nursing.

AimsTo provide an expert overview on the current state of evidence as it relates to person and relationship‐centred care.DesignReview and commentary.MethodsThe 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.ResultsThere 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.