Care Relationships Research Articles

Designing AI for Partnership in Care

As the global population ages, promoting active aging and enabling older adults to age in place has become increasingly important. This paper explores the role of technology in this process, particularly in helping older adults identify and pursue meaningful activities and provide care for loved ones. Through two example projects -- the design of a social robot that supports older adults' experience of a sense of meaning and purpose (ikigai), and an exploration of how technology can assist with caregiving -- we demonstrate how technology can enhance the care for older adults. This short paper highlights how technology can create a more fulfilling and supportive active aging experience, empowering older adults to engage with what and who they care about and enhancing their caring relationships.

Doctor-patient communication as prevention of medical malpractice litigation

Introduction: By medical malpractice we mean the flow of complaints that affects hospitals and that, more and more often, concerns shortcomings in the care relationship and defects compromise the therapeutic alliance. Methodology: Review of the literature concerning doctor-patient communication and the correlation between complaints and the quality of patient communication. Results: international experiences have provided numerous concrete elements to enhance a plan for improving doctor-patient communication. Discussion: the enhancement of the communication and relational performance of health professionals should be pursued as an index of quality, ethics and legitimacy of care. An internal training programme on relational skills, directly in the healthcare teams, is proposed. Conclusions: in addition to verbal communication between doctor and patient, written forms also play a crucial role, both as a pact of care and in the courts.

Diverse methodologies of care: Thinking with and practising (soil) in situated, affective and enactive ways

AbstractThis research article outlines a provocation for diverse and experimentally open, situated approaches to exploring care and caring. The diversely positioned authors discuss this idea using the subject of soil, in the place and context of Aotearoa New Zealand. Little is known about the diversity of ways that everyday people value, or, have caring relationships for/with soil, among a plethora of research that positions soil ‘care’ around, for example, commercial food production, waste‐sinking, or property land value. To study diverse care in relation to soil, as with many relational subjects, requires equivalent diversity in the ways in which we might explore it. Here we outline the basis for diverse, situated methodologies that necessarily lead to a diversity of methods. This paper looks at the methodological imperatives that lead to exploring care, and discusses a variety of methods that generate different forms of ‘data’ with different forms of representation of that care. We observe that to holistically observe care relations with soil requires a diversity of methodologies, inherently ontological and epistemological – worldmaking. We discuss situated and enactive, affective approaches of Kaupapa Māori enquiry, monitoring and arts‐based approaches to ‘measure’ soil care taking place, in place, and contextualise this with our own author positionality. We discuss this suite of experimental, reflexive, affective and responsive ways to measure soil care that are contingent on that being cared about, for, with and by, and which reciprocally give care.

Action needed to address molecular HIV surveillance ethical concerns.

There have been growing ethical concerns about the widespread use of HIV-related molecular epidemiological public health surveillance and research-or what has come to be known as molecular HIV surveillance. The varied concerns of the practice originate due to lack of informed consent, lack of demonstrated benefit for communities, potential for eroded patient care relationships leading to poor health outcomes, and potential implications for information sharing and findings which could increase stigmatization and other negative impacts in contexts where HIV, drug use, sex work, migration, and poverty are criminalized. As people living with HIV, lawyers, clinicians, and social scientists, we are part of the growing movement calling for critical and ethical attention to the practice of molecular HIV surveillance and the public health logic which underwrites the practice. We urge Canadian public health actors and researchers working with molecular surveillance data to heed global guidance and recommendations for culturally informed ethical practices, to engage community members in HIV surveillance programs, and to ensure that people living with HIV are provided appropriate consent processes for uses of secondary data analysis. Furthermore, we urge researchers and Research Ethics Boards to interrogate assumptions of impracticality in seeking subsequent consent to use persons' health information held in data repositories and explore new methods of informed consent.

Attachment-informed mental healthcare systems as 'organisational caregivers': ideas for the future.

Over the past 50 years, mental health services have evolved significantly, influenced by shifts in theoretical and practical approaches to mental disorders. Key among these changes are the biopsychosocial and recovery models, which highlight resilience and quality of life in treatment. However, traditional psychiatry has often struggled to embrace these changes because of reductionist perspectives that overlook psychosocial factors, resulting in fragmented care and reduced accessibility. Proposed solutions have faced implementation barriers in absence of a coherent theoretical framework. Here, we outline how attachment theory may offer a promising framework to drive systemic change in mental health by emphasising secure emotional bonds at both the organisational and individual level. Within an attachment-informed culture, services may act as 'organisational caregivers' that promote continuity of care, independence and stronger clinical relationships. In turn, this may foster more inclusive, responsive and resilient mental healthcare systems that prioritise patients' needs and empowerment.

Connecting Urban Mobility and Gender Roles: Ho Chi Minh City, Vietnam

Good transport infrastructure and services improve the well-being of all groups of the population, including women, men, children, the elderly and people with disabilities. However, they are often incorrectly considered ‘gender-neutral’. Mobility is socially determined by gender roles related to reproduction, production and community. This research investigates the cohesive relationship of urban transportation, including mobility, gender and care, by studying the case of Ho Chi Minh City (HCMC). The differences between women’s and men’s participation in transportation are identified and connected to gender-role activities. The findings show a clear relationship between urban mobility and gender roles. There is clear evidence of women’s trade-off between travelling less than men and carrying more unpaid work in the family, which is more pronounced for married women who live with their families. Differences in women’s traffic experiences compared to men’s reveal the disadvantages that women face in traffic. The findings of this research will assist the HCMC transport sector and project executive agencies in designing gender-inclusive projects. The dissemination of this research will draw attention to the gender dimension of transport and encourage gender mainstreaming across the transport sector to promote and support equality and women’s empowerment.

Cleaning: Practicing Everyday Aesthetics and Care

Performing various tasks to manage our daily lives does not fit comfortably with the predominant model of aesthetics, which consists of a disinterested spectator making a judgment on the aesthetic value of an object. Taking ‘cleaning’ as an example, this paper illuminates its rich aesthetic potential, which includes sensory and bodily engagement, development of aesthetic sensibility, activation of imagination, and cultivation of a care relationship with other people and the world.

Collaging together-apart: building trust and hope in social innovation and design pedagogies

ABSTRACT This article explores how relationships of care, trust and hope might be fostered in a social innovation design course at a South African university of technology. Rather than shy away from the challenges of our uncertain world, the paper proposes feminist pedagogical strategies that seek to nurture students’ capacity for trust and hope, rather than overwhelm and despair, through carefully curated collaborative-collage-making processes. By interweaving Bracha Ettinger’s theory of matrixial trans-subjectivity and Karen Barad’s agential realism, the generative role that arts-based practices offer social innovation design pedagogies is made explicit. The paper will show how collaborative artworking activated a co-affective encounter in which students and myself, rather than drowning in overwhelm, discovered new educational imaginaries and Hope-full renewals.

A Systematic Review of Interventions to Promote Parent-Teacher Relationships in Early Care and Education: Exploring the Social Process Between Parents and Teachers

Parent-teacher relationships are known to promote positive outcomes for young children in early childhood education; however, parents and teachers face barriers to forming quality relationships. To better understand how to support parents and teachers in forming quality relationships, the present systematic review sought to identify existing interventions designed to promote quality parent-teacher relationships in early childhood education. Systematic search and data extraction identified peer-reviewed manuscripts describing interventions that included components to increase parent-teacher relationships in early childhood education. Each included manuscript was evaluated to answer the following questions: (1) how is the social process between parents and teachers conceptualized?, (2) what strategies were used to improve this social process?, and (3) what outcomes are associated with improving this social process ? Nine out of the 1,992 nonduplicate screened manuscripts met inclusion criteria. Results indicate a small body of research focused solely on interventions designed to improve parent-teacher relationships. Included interventions were limited in their conceptualization of the social process between parents and teachers, strategies to improve it, and associated outcomes assessed. Additional research is needed to understand low-cost and highly feasible interventions that promote quality parent-teacher relationships in early childhood education.

SHARE Corona Surveys: study profile

At the onset of the COVID-19 pandemic, the Survey of Health, Ageing, and Retirement in Europe (SHARE) was in a unique position to respond to the need for high quality survey data on people’s changing living situations. Implemented as two telephone interviews in the summer of 2020 and 2021 in 27 European countries and Israel, the SHARE Corona Surveys present a great advantage by their integration into the longitudinal, multidisciplinary and ex-ante harmonised design of the SHARE study. This allows researchers to trace changes from the pre-pandemic period, through the different stages of the pandemic, and the post-pandemic situation. This article lays out the research aims and how the two Corona Surveys fit in the general design of SHARE. It presents the main design features of the SHARE Corona Surveys following the survey life cycle. It starts with information on procurement, contracting, funding, ethics, and data protection and sampling, followed by information on instrument design, translations, questionnaire content and interviewer training. Last, fieldwork, panel care and data processing are described. Focused on topics of health behaviour, health care, economics and social relationships, the balanced panel sample of the two SHARE Corona Surveys comprises more than 48,000 interviews and provides valuable information on how the 50+ population coped with the COVID-19 pandemic. The experience of implementing the SHARE Corona Surveys also offers insights into use of agile project management methods for large survey infrastructures and moving towards a multi-mode design in an ongoing panel data collection project.

Flexibly Incorporating the Dyad into Psychosocial Intervention: Considerations for Neuropalliative Care.

This paper reviews dyadic psychosocial intervention approaches that flexibly incorporate both dyad members despite challenges to equitable involvement due to cognitive limitations or limited availability. We provide an overview, analysis, and examples for the following dyadic intervention approaches: (1) shared interventions that involve each dyad member equitably (i.e., higher care recipient cognition, higher care-partner availability); (2) patient-focused interventions that primarily engage care recipients with early stages of neurocognitive disorders, yet include care-partners in select sessions and target dyadic and relationship needs (i.e., higher care recipient cognition, lower care-partner availability); and (3) care-partner focused interventions that primarily engage care-partners, yet still address care recipient and relationship needs (i.e., lower care recipient cognition, higher care-partner availability). In our review, we propose a flexible definition of dyadic psychosocial intervention that considers the continuum of individuals' involvement, measurement, content, and conceptual background. We conclude with a discussion of implications for neuropalliative care.

Living With and Beyond Cancer With Comorbid Conditions: Qualitative Insights to Understand Psychosocial Support Needs.

There is a pressing need to understand and explore the complex experiences and psychosocial support needs of people LWBC-CM and their informal caregivers, to inform survivorship and supportive care interventions. In-depth qualitative interviews were conducted with people LWBC-CM and their informal caregivers in Scotland, invited via primary care. One-to-one, face-to-face interviews were conducted with informed consent exploring experiences of symptoms, psychosocial support needs and interactions with health services. Interviews were transcribed and analysed using a thematic approach. Forty-one people LWBC-CM and twenty-three informal caregivers were interviewed. Four themes were identified: the Physical and Psychological Impact of Cancer and Comorbidity, Dominant Storie-Prioritising Conditions and Making Sense of Illness, Navigating Health Services and Treatments and Caring for People with Complex Health Conditions. Type and severity of conditions mediated people's experiences and daily living. Complex fatigue-fatigue arising from a number of health conditions-dominated symptomology. Participants navigated multiple appointments and complex medication regimes. Patients identified the need for acknowledgement of other chronic conditions and for streamlined care provision. Mutual caring and social isolation were also identified as part of the caring relationship. There is a mandate to address the psychosocial support needs of people LWBC-CM, and their informal carers, given the burden of treatment for cancer survivors with moderate to severe complex conditions as they navigate health services. A patient representative has been involved in all stages of the study from development of the application through study design, commenting on documentation, analysis of transcripts and writing the manuscript. They are included as an author on the manuscript.

The role of personality, empathy, and the perception of the instructor's caring on nursing students' burnout: A cross-sectional study

AimThe present study aimed to evaluate the contribution of personality, empathy, and the perception of instructor's caring in predicting burnout in nursing students. BackgroundBurnout is alarmingly prevalent and rising among nursing students. Furthering our understanding of individual and clinical environmental antecedents of burnout is crucial to shield nursing students' well-being during their training. MethodsIn a cross-sectional study design, the Ten Item Personality Inventory (TIPI), the Brief version of the Interpersonal Reactivity Index (BIRI), the Nursing Students' Perception of Instructor Caring (NSPIC), and the Copenhagen Burnout Inventory (CBI) were administered to 361 (83.9 % females) Italian nursing students between July and December 2021. t-Tests, analyses of variance, Pearson's correlations, and hierarchical regressions were performed to examine the association of CBI with socio-demographics, TIPI, BIRI, and NSPIC. ResultsBeing female and having a low household income were predictors of Personal Burnout and Work-related Burnout. Personal Burnout was positively associated with TIPI-Neuroticism and BIRI-Personal Distress. Work-related Burnout was positively associated with BIRI-Personal Distress and NSPIC-Control, and negatively associated TIPI-Openness to Experience, NSPIC-Support, NSPIC-Confidence. Client-related Burnout was negatively associated with TIPI-Agreeableness, NSPIC-Support, NSPIC-Confidence. Beyond the effect of socio-demographics, TIPI, and BIRI, NSPIC subscales significantly contributed to the explained variance in CBI scores. ConclusionsSex, household income, personality, and empathy should be considered when designing interventions to decrease burnout in nursing students. Promoting caring relationships between clinical instructors and their pupils may contribute to reduce nursing students' burnout.

The Path Towards Personal Growth in Spousal Caregiving

Caregiver support is necessary for many long-term ill or disabled people to enable them to live at home. However, the impact of this care relationship on the caregiver is still partly unknown. This article focuses on the process of achieving personal growth in spousal caregiving. The aim of our study was to conduct an integrative literature review to describe the aspects associated with achieving personal growth as well as to analyze the relationship between the aspects involved. The thematic analysis method was used with inductive content classification to modify the themes. The analysis highlighted three main aspect categories connected with achieving personal growth: the means, coping styles, and personal or caregiving resources. In addition, the path from adversities and challenges towards personal growth and positive experiences in spousal caregiving was revealed by analyzing the relationship between the identified aspects. We found that the means, based on social support and self-care, help caregivers to adopt positive coping strategies, reframing, and resilience, which are associated with achieving personal growth. Also, personal or caregiving resources, such as meaningful caring experiences, religiosity, and spirituality, hope, positive personality characteristics, family functioning, and disease severity of the care recipient, were associated with achieving growth. Finally, our findings suggest that it is important to further study the path towards personal growth in spousal caregiving and to find the best possible ways to support caregivers in difficult moments and periods of caregiving.

Exploring frailty perspectives of older people and professionals: a systematic integrative review

Abstract Frailty is a common but complex phenomenon that is approached from theoretical and professional perspectives but rarely from the perspectives of older people and their essential stakeholders. Different or opposing perspectives on frailty at personal, organisational, and community levels can negatively affect care for frail older people. This systematic integrative review synthesises the perspectives on frailty of older people, health/social care professionals, informal caregivers, managers and policymakers, using thematic analysis. We use the Joanna Briggs Institute–Critical Appraisal Checklist to appraise the quality of 52 qualitative and mixed-method studies drawn from the PubMed/MEDLINE, CINAHL, PsycINFO, Embase, and Web of Science databases (inception–December 2023). Of these, 33 include the perspectives of older people, 27 of health/social care professionals, four of managers, and six of informal caregivers. Structuring the perspectives along six themes – ‘the multi-dimensional nature of frailty’, ‘the dynamics of frailty’, ‘the complexity of frailty’, ‘frailty in relation to age’, ‘frailty in relation to health’ and ‘frailty in relation to dependence’ – revealed substantive similarities in the conceptualisation of frailty between older people and professionals, e.g. regarding frailty’s dynamic and multi-dimensional nature. However, older people and professionals differ in their interpretations of frailty: older people take a personal view, while professionals take a more practical view. The identified discrepancies in perspectives may affect care relationships and care for frail older people. Therefore, we advocate a systems approach that incorporates multiple perspectives to form a comprehensive view of frailty and allows for a situation-specific shared understanding of frailty in older people.

Acceptability determinants of a proposal to reduce antiretroviral treatment to an oral two-drug regimen among patients living with HIV and physicians in France.

An oral two-drug regimen (O2DR) in the form of a once-a-day single tablet is now recommended for treatment switching and treatment initiation for HIV. In clinical care, the process of treatment change refers to adaptation issues, both individual and within the care relationship. The study aim is to present the determinants involved in the acceptability of switching to O2DR in the PROBI (Patient-Reported Outcomes BItherapy) qualitative study. The study includes 30 interviews: 15 were conducted with doctors caring for people living with HIV, 15 were conducted with patients who had been offered a change of treatment. A double analysis was carried out: lexicometric analysis to highlight the structuring of the discourse around the change in treatment and a thematic analysis to understand the associated issues more precisely. The results highlighted common concerns with respect to switching to O2DR. Also, the caregiver-patient relationship was a central determinant in treatment switching. Information, knowledge and representations of O2DR are also factors facilitating treatment change and should be taken into account for doctors' and patients' adherence.

Understanding Therapeutic Lying In The Care Of A Person with Dementia: An Evolutionary Concept Analysis

Abstract Background Therapeutic lying, described as any verbal or non-verbal behaviour or communication that involves the manipulation of information has been shown to be pervasive in dementia care. However, its theoretical foundation is difficult to underpin and appears to have evolved through practice without a clear definition. The aim of this study is to establish conceptual clarity around the concept of therapeutic lying in the care of a person with dementia. Methods Rodgers’ evolutionary concept analysis was used to focus on the contextual qualities of therapeutic lying. This dispositional view recognises that concepts are fluid in nature. The analysis involves deconstructing the concept into surrogate terms, attributes, antecedents, consequences and related terms to generate a greater understanding of its innate features. A systematic search relating to “therapeutic lying” and “dementia” was undertaken. The final study sample consisted of 37 papers. Results This analysis revealed therapeutic lying’s surrogate terms, attributes, antecedents, consequences and related terms in the care of a person with dementia. This study highlighted this concept is intended to be used in the person's best interests, for the purpose of doing good. However, its subjective nature makes it an extremely difficult concept to grasp collectively. Conclusion Therapeutic lying is highly dependent on individual interpretation and the caregiver’s moral compass. It can potentially damage trust in a caring relationship and may contribute to the “othering” of a person with dementia. The negative consequences surrounding this concept must be studied comprehensively before it is considered in practice. Therapeutic lying should be used only as a last resort when a person with dementia is exhibiting truth related distress. As the therapeutic effect of a therapeutic lie cannot be guaranteed, the term “well intentioned lying” is proposed as a potential alternative for the concept as this term highlights the caregiver’s good intention behind incorporating a lie during care.

Sensory attunements of caregivers and care receivers: the value of an embodied and emplaced approach in everyday care encounters

ABSTRACT This paper underlines the role of the senses in everyday care encounters within hospice and dementia care settings. We bring together two ethnographic studies, which adopted embodied, emplaced, and sensory approaches to understanding everyday life and care. We draw on existing conceptualizations of bodywork, and theorizations of sensory atmospheres of care, to extend ideas about the relationality of experience shared between those receiving and providing care. Our analysis illuminates the entanglement of the sensory within care relationships, as we appreciate the ways in which atmospheres are lived and felt in relation to others. We consider the environments and engagements between staff, patients, and residents, which facilitate restorative and supportive connections, as well as disrupt feelings about identity and choice. Appreciating the interconnected nature of care, this paper sheds light on the sensory, embodied, and material practices that shape atmospheres in hospice and dementia care settings.

Utilising Narrative Medicine to Identify Key Factors Affecting Quality of Life in Dry Eye Disease: An Italian Multicentre Study.

Despite an improved understanding of its pathogenesis, dry eye disease (DED) remains relatively underestimated and its treatment challenging. A better alignment between the clinical evaluation and the patient self-assessment also requires capturing the whole patient experience of DED. This project aimed to unveil this experience through narrative medicine (NM). The project involved 38 expert centres in Italy and one in San Marino, targeting adult patients with DED, their informal caregivers and their treating ophthalmologists. Written narratives and sociodemographic and quality of life (QoL)-related data were anonymously collected through the project's webpage. Narratives were analysed through MAXQDA (VERBI Software, Berlin, Germany), NM classifications and content analysis. A total of 171 patients with DED, 37 informal caregivers and 81 ophthalmologists participated in the research. DED was defined as a disabling condition by 19% of patients and 35% of caregivers; 70% of patients reported that a therapeutic alliance is an integral part of DED treatment and 32% hope for more effective therapies. Forty-four per cent of patients assessed their own QoL as good; however, DED emerged as importantly impacting work performance and social events. DED physical, emotional and economic burden and the cruciality of a trusting care relationship represent the main themes that emerged across all narratives, while empathy and effective treatment are among the factors favouring coping with DED. This project marked a pioneering initiative investigating the lived experience of patients with DED through NM, simultaneously involving all viewpoints involved in the care pathway. NM enabled the unveiling of factors favouring the ability to cope with DED and its associated QoL implications and provided valuable insights to improve the therapeutic alliance.

Perceptions and Expectations of Patients with Lung Cancer and Melanoma about the Telenursing Approach: A Phenomenological Study.

Telenursing could improve continuity of care in patients with cancer. This study aims to explore the expectations and perceptions of patients with lung cancer and melanoma toward telenursing. A descriptive qualitative study using a phenomenological approach was conducted on a convenience sampling of twenty patients aged 18 years or over from a Cancer Center. With the consent of patients and the relevant Ethics Committee, in-depth open-ended face-to-face interviews were conducted until data saturation. The phenomenon's essence was achieved through themes emerging from the qualitative data analysis. Patients' perceptions and expectations were related to areas explored by a general theme on the nurse-patient relationship's importance. Four themes and eleven sub-themes were focused on misconceptions about lack of use, patients' potential and fears, the home as a place of care, and the caring relationship. Fifteen patients perceived the internet as a chaotic "bubble". Despite the lack of previous use, patients consider telenursing positively as "a bridge between home and care", especially in the advanced stages of the disease. They highlighted strengths and weaknesses of telenursing, such as having "someone for you", connection, fear of psychological addiction, loss of privacy, and lack of empathy. This study was not registered.