Insights Into Informal Caregivers' Well-being: A Longitudinal Analysis of Care Intensity, Care Location, and Care Relationship.

OBJECTIVES: This study investigates the psychological well-being of informal caregivers over time. It identifies the thresholds (or "tipping points") of caring intensity at which caregiving is associated with lower psychological well-being, and how this varies by care location and caregiver-care recipient relationships. It also examines how caring location and relationship are linked to informal caregivers' psychological well-being while controlling for caring intensity. METHODS: Waves 1-18 (1991-2009) of the harmonized British Household Panel Survey and Waves 1-8 (2009-2017) of the U.K. Household Longitudinal Study were analyzed. Psychological well-being was measured using the General Health Questionnaire (GHQ)-12 score. Care intensity was measured by the weekly hours of care provided. Fixed-effects estimators were applied to the GHQ-12 score of caregivers across different care intensities, caring locations, and caring relationships. RESULTS: All levels of informal care intensity are associated with lower psychological well-being among spousal caregivers. The thresholds to well-being are 5 hours per week when caring for a parent, and 50 hours per week when caring for a child (with a disability or long-term illness). Caring for "other relatives" or nonrelatives is not negatively associated with psychological well-being. The thresholds are 5 hours per week for both coresident and extraresident caregivers. Extraresident caregivers experience better psychological well-being compared to coresident caregivers, given relatively lower weekly care hours. Caring for primary kin (especially spouses) is linked to lower psychological well-being compared to other caregiving relationships, regardless of care intensity. DISCUSSION: Policy and practice responses should pay particular attention to spousal caregivers' well-being. Caregiving relationship has a stronger association with the caregiver's well-being than care location.

Reconceiving vulnerabilities in relations of care how to account for and deal with carers' vulnerabilities.

While carers' vulnerability has often been neglected in the literature, the recent COVID-19 pandemic brought this issue to the fore. This article explores why it has been so often ignored and how could it be dealt with differently. It does so in the form of a philosophical and conceptual investigation illustrated by various examples and situations, related primarily, but not exclusively, to the COVID period. Criticising a property-based view, and based on examples of carers' vulnerability during the pandemic, our investigation suggests that carers' vulnerability is relationally constructed and played out on multiple interwoven dimensions that may contradict each other. Our examples also suggest that the relational construction of vulnerabilities is socially and organisationally mediated, calling for the development of social and organisational forms of mediation that may help carers deal with their vulnerabilities. Second, and rather counterintuitively with regard to the COVID-period, we question the negative valence usually associated with vulnerability and analyse how this affects ways of dealing with carers' vulnerabilities and the co-creation of care. Finally, following Gilson (2014), we propose an ambivalent, relational conception of vulnerability, considered as 'openness to affectation by' and offer some theoretical and practical implications. Theoretically, this conception also allows us to consider such openness as an ability that may nurture carers' 'response-ability'. It also allows us to develop specific relational ethics for and in care relationships. Practically, this re-conceptualisation may help carers better embrace and process their vulnerabilities, including responses to negative affectations following exposure to carees. It may also facilitate their 'reception' of carees, and help co-create and adapt responses to carees' calls, thus avoiding paternalistic responses.

The ethnographer, the research participants, and the meaningful others: Gray zones of relationality and the ethics of dementia care research.

The debate on the ethics of dementia research has tended to treat individuals with dementia, primary caregivers other family members and local communities as preestablished and distinct categories of research participants. What has been overlooked are the meaningful social relationships that run through these categories and how these relationships affect the ethnographer's positionality during and after fieldwork. In this paper, drawing on two cases of ethnographic research on family dementia care in North Italy, we propose two heuristic devices, "meaningful others" and "gray zones", which highlight the ambiguous positionality of ethnographers in care relations and local moral worlds. We further show the benefit of incorporating these devices in discussions on the ethics of dementia care research: by rendering problematic any fixed and polarized positionality of the ethnographer, these two devices allow for a voice to be given to the individuals who represent the main research focus while addressing the interdependence and ethically nuanced dimension of caring relations.

Exploring nursing home resident and their care partner priorities for care using the Action-Project Method.

BACKGROUND: Nursing home (NH) residents' experiences are embedded within their relationships to others. Our objectives were to describe how residents and care partners (family or staff members) jointly construct, discuss, and act on care priorities. METHODS: We used Action-Project Method, a qualitative method focused on action within social context. We recruited 15 residents and 12 care partners (5 family and 7 staff members) from 3 urban NHs in Alberta, Canada. Residents and care partners participated in a video-recorded conversation about their experiences in the NH, then individually reviewed the video-recording to add context to the conversation. Following transcription, preliminary narrative construction, and participant feedback, the research team conducted in-depth analysis to identify participant actions, goals, and projects, including those jointly shared by dyad members. RESULTS: All participants' intentions could be broadly described as "making time in the NH as good as possible" and projects were grouped into five categories: resident identity, relationships (both presence and absence), advocacy, positivity, and respectful care. Participants often raised issues of short-staffing as a significant barrier to respectful care. Care partners, especially staff, used positivity to redirect residents from difficult topics. Joint projects could be identified in some, but not all, cases. CONCLUSIONS: We found that maintaining a sense of identity, fostering relationships, and receiving respectful care were important to residents but that short-staffing created barriers. Methods to capture these aspects of the resident experience are needed but should not be influenced by care partners' tendency towards positivity in resident interactions.

Understanding Capacity and Optimizing Meaningful Engagement among Persons Living with Dementia.

Meaningful engagement is a key dimension of quality of life among persons living with dementia, yet little is known about how to best to promote it. Guided by grounded theory methods, we present analysis of data collected over a 1-year period in four diverse assisted living (AL) communities as part of the study, "Meaningful Engagement and Quality of Life among Assisted Living Residents with Dementia." Our aims are to: (a) learn how meaningful engagement is negotiated among AL residents with dementia and their care partners; and (b) identify how to create these positive encounters. Researchers followed 33 residents and 100 care partners (formal and informal) and used participant observation, resident record review, and semi-structured interviews. Data analysis identified "engagement capacity" as central to the negotiation of meaningful engagement. We conclude that understanding and optimizing the engagement capacities of residents, care partners, care convoys, and settings, are essential to creating and enhancing meaningful engagement among persons living with dementia.

Care relationships and the autonomy of people with physical disabilities.

As a form of functional diversity, spinal cord injury expressed by tetraplegia is one of the most serious events that can impact people, affecting their family and socioeconomic life. The type of care relationship established in these cases will be essential for preserving autonomy. The objective of this study was to understand how care relationships influence the autonomy of people with tetraplegia and the dynamics that trigger practices of autonomy violation, maintenance and promotion. This research is inspired by problematization as a methodology using the Arch of Maguerez as an analytical approach strategy that enables an engagement between empirical and theoretical data. Some models of care relationships identified in this study either promote or violate autonomy: the protectionist model, based on the biomedical interpretation model of disability and the bodily impediments caused by spinal cord injury; the participatory model, involving the patient's interest in adapting to their new condition of family and community life, seeking to understand the practical aspects of daily life; the sharing model, in which the complicity and understanding of new forms of bodily expression allow the caregiver to be almost an extension of the tetraplegic person's body; the delegate model, which occurs in relationships with professional caregivers; and the emancipatory model, which seeks to empower the patient, highlight potentialities, and encourage autonomy. The key components of these conceptual care models guided the elaboration of hypotheses for intervention with the objective of maintaining and promoting the autonomy of people with tetraplegia through supported care.

Relações de cuidado junto a pessoas diagnosticadas com Transtorno do Espectro do Autismo / Care relationships with people diagnosed with Autism Spectrum Disorder / Relaciones de cuidado de personas diagnosticadas con Trastorno del Espectro del Autismo / Relations de soins avec les personnes atteintes par le trouble du spectre de l'autisme

Resumo O Transtorno do Espectro do Autismo (TEA) é descrito pela literatura médica como um transtorno do desenvolvimento que apresenta um quadro sintomatológico crônico que afeta a interação social, a comunicação, os comportamentos e o funcionamento sensorial da pessoa. Propomos uma reflexão acerca das dimensões de cuidado a pessoas diagnosticadas com TEA buscando compreendê-las em relações interdependentes pessoa-cultura. Conduziram-se entrevistas semiestruturadas com uma pessoa diagnosticada com TEA e três pessoas que convivem com pessoas com esse diagnóstico. Os dados foram coletados no Centro Terapêutico-Educacional Potencializar (Cetep), localizado em Jundiaí, São Paulo, Brasil. Conduzimos entrevistas semiestruturadas acerca das relações que os participantes estabelecem ou estabeleciam com o TEA. Nossos resultados e discussões destacam a importância de compreender processos multidirecionais, nos quais as dimensões do cuidado apontam para a responsabilidade dos agentes de cuidado diante de procedimentos adotados nas intervenções dirigidas a pessoas que recebem esse diagnóstico.

Abstract Autism Spectrum Disorder (ASD) is a developmental disorder with a chronic symptomatologic picture that affects a person's social interaction, communication, behaviors and sensory functioning. This paper discusses care relationships established with people diagnosed with ASD focusing on their interdependent aspects. Data collection took place at Centro Terapêutico-Educacional Potencializar (CETEP) located in the city of Jundiaí, São Paulo, Brazil. We conducted semi-structured interviews about the relationships that participants establish or established with the TEA. All data underwent a dialogical analysis. Our results and discussions highlight the importance of understanding the multidirectional processes in which care relationships point to care agents' responsibility regarding interventions aimed at this population.

Resumen El trastorno del espectro del autismo (TEA) se describe en la literatura médica como un trastorno del desarrollo que implica diversos grados de dificultad en la interacción social, la comunicación, los comportamientos y el funcionamiento sensorial de la persona. En este texto proponemos discutir las relaciones de cuidado de personas diagnosticadas con TEA enfocándonos en los aspectos interdependientes persona-cultura. Realizamos entrevistas semiestructuradas a una persona diagnosticada con TEA y a otras tres que conviven con autistas. Recopilamos los datos del Centro Terapêutico-Educacional Potencializar (CETEP), ubicado en la ciudad de Jundiaí, São Paulo, Brasil. Realizamos entrevistas semiestructuradas sobre las relaciones que los participantes establecen o establecen con la TEA. Nuestros resultados apuntan la importancia del análisis sobre procesos multidireccionales, en los cuales las dimensiones del cuidado muestran una postura responsable de los agentes del cuidado ante los procedimientos adoptados en las intervenciones que se destinan a las personas con este diagnóstico.

Résumé Le Trouble du spectre de l'autisme (TSA) est décrit dans la littérature médicale comme un trouble du développement présentant un encadrement symptomatique chronique qui affecte l'interaction sociale, la communication, les comportements et le fonctionnement sensoriel du sujet. Cet article discute les dimensions du soin envers les personnes atteintes par le TSA en cherchant à les comprendre dans des relations d'interdépendance personne-culture. La collecte des données a eu lieu au Centro Terapêutico-Educacional Potencializar - CETEP situé dans la ville de Jundiaí, São Paulo, Brésil. Nous avons mené des entretiens semi-directifs sur les relations que les participants établissent ou ont établies avec le TEA. Nos résultats et débats soulignent l'importance de comprendre les processus multidirectionnels où les dimensions du soin mettent en évidence la responsabilité des agents de soins face aux procédures adoptées dans les interventions dirigées aux sujets touchés par ce diagnostic.

Enabling At-Homeness for Older People With Life-Limiting Conditions: A Participant Observation Study From Nursing Homes.

At-homeness, as an aspect of well-being, can be experienced despite living with life-limiting conditions and needs for a palliative approach to care. In nursing homes, older residents with life-limiting conditions face losses and changes which could influence their experience of at-homeness. The aim of this study was to explore how nursing staff enable at-homeness for residents with life-limiting conditions. Interpretive description was employed as the design using data from participant observations and formal and informal interviews related to nursing care situations. The strategies found to be used to enable at-homeness comprising nursing staff presenting themselves as reliable, respecting the resident's integrity, being responsive to the resident's needs, collaborating with the resident in decision-making, and through nurturing comforting relationships. The result on how to enable at-homeness could be used as strategies for a person-centered palliative approach in the care for residents in nursing homes.

Gratitude between patients and their families and health professionals: A scoping review.

AIM: To synthesize existing evidence regarding gratitude in health care relationships, with a specific focus on expressions of gratitude from patients and their families to health professionals, including their meaning and impact. BACKGROUND: Studying expressions of gratitude by patients and their families within the scope of health care is an innovative way of identifying the most valuable elements of care. EVALUATION: A scoping review of three data bases was conducted using the terms gratitude and health professionals (1984-2016). Data were extracted, analysed thematically and synthesized. KEY ISSUES: A total of 32 publications were identified, around half being opinions or reflections. Thematic analysis resulted in the identification of three themes: the characteristics of expressions of gratitude, the focus of expressions of gratitude and the effect of gratitude on health professionals. CONCLUSIONS: Expressions of gratitude by patients and their families may have an important personal and professional effect on health professionals that is long lasting. A systematic study of its effect is needed. IMPLICATIONS FOR NURSING MANAGEMENT: Gratitude from patients and their families may contribute to motivation and retention among health professionals. Gratitude can be nurtured and is associated with a healthy work environment.

The midwife-woman relationship in a South Wales community: Experiences of midwives and migrant Pakistani women in early pregnancy.

BACKGROUND: In 2015, 27.5% of births in England and Wales were to mothers born outside of the UK. Compared to their White British peers, minority ethnic and migrant women are at a significantly higher risk of maternal and perinatal mortality, along with lower maternity care satisfaction. Existing literature highlights the importance of midwife-woman relationships in care satisfaction and pregnancy outcomes; however, little research has explored midwife-woman relationships for migrant and minority ethnic women in the UK. METHODS: A focused ethnography was conducted in South Wales, UK, including semi-structured interviews with 9 migrant Pakistani participants and 11 practising midwives, fieldwork in the local migrant Pakistani community and local maternity services, observations of antenatal appointments, and reviews of relevant media. Thematic data analysis was undertaken concurrently with data collection. FINDINGS: The midwife-woman relationship was important for participants' experiences of care. Numerous social and ecological factors influenced this relationship, including family relationships, culture and religion, differing health-care systems, authoritative knowledge and communication of information. Marked differences were seen between midwives and women in the perceived importance of these factors. CONCLUSIONS: Findings provide new theoretical insights into the complex factors contributing to the health-care expectations of pregnant migrant Pakistani women in the UK. These findings may be used to create meaningful dialogue between women and midwives, encourage women's involvement in decisions about their health care and facilitate future midwifery education and research. Conclusions are relevant to a broad international audience, as achieving better outcomes for migrant and ethnic minority communities is of global concern.

Empathy Is a Protective Factor of Burnout in Physicians: New Neuro-Phenomenological Hypotheses Regarding Empathy and Sympathy in Care Relationship.

Burnout is a multidimensional work-related syndrome that is characterized by emotional exhaustion, depersonalization-or cynicism-and diminution of personal accomplishment. Burnout particularly affects physicians. In medicine as well as other professions, burnout occurrence depends on personal, developmental-psychodynamic, professional, and environmental factors. Recently, it has been proposed to specifically define burnout in physicians as "pathology of care relationship." That is, burnout would arise, among the above-mentioned factors, from the specificity of the care relationship as it develops between the physician and the patient. Accordingly, experimental studies and theoretical approaches have suggested that burnout and empathy, which is one of the most important skills in physicians, are closely linked. However, the nature of the relation between burnout and empathy remains not yet understood, as reflected in the variety of theoretical and contradictory hypotheses attempting to causally relate these two phenomena. Firstly, we here question the epistemological problem concerning the modality of the burnout-empathy link. Secondly, we hypothesize that considering the multidimensional features of both burnout and empathy, on one hand, and on the other hand, the distinction between empathy and sympathy enables to overcome these contradictions and, consequently, gives a better understanding of the relationship between burnout and empathy in physicians. Thirdly, we propose that clarifying the link between burnout, empathy and sympathy would enable developing specific training in medical students and continuous professional formation in senior physicians and would potentially contribute to the prevention of burnout in medical care.

Health/Service Providers' Perspectives on Barriers to Healthy Weight Gain and Physical Activity in Pregnant, Urban First Nations Women.

The purpose of this article is to examine health/service providers' perspectives of barriers to healthy weight gain and physical activity for urban, pregnant First Nations women in Ottawa, Canada. Through the use of semi-structured interviews, we explored 15 health/service providers' perspectives on the complex barriers their clients face. By using a postcolonial feminist lens and a social determinants of health framework, we identified three social determinants of health that the health/service providers believed to have the greatest influence on their clients' weight gain and physical activity during pregnancy: poverty, education, and colonialism. Our findings are then contextualized within existing Statistics Canada and the Ottawa Neighbourhood Study data. We found that health/service providers are in a position to challenge colonial relations of power. We conclude by urging health/service providers, researchers, and policymakers alike to take into consideration the ways in which these social determinants of health and their often synergistic effects affect urban First Nations women during pregnancy.