Caregiving

Numerose ambivalenze, conflitti interpretativi e problemi di traduzione culturale sorgono
quando si usa il concetto di care. Per l’antropologia medica, esso ha offerto la
possibilità di criticare forme di riduzionismo bio-medico della cura. Allo sviluppo di
questa visione morale ha contribuito l’aumento di malattie croniche per cui non esiste
“cura”, nel senso di guarigione – cure. Allo stesso tempo, il lavoro di cura informale ha
assunto un’importanza strategica nello scenario di ristrutturazione dei servizi pubblici
di assistenza. In questo senso, la visione morale del “prendersi cura” è stata accusata
di distogliere l’attenzione dalle forme di diseguaglianza sociale che si riproducono
nell’ambiente domestico e familiare attraverso la cura stessa.
Attraverso il racconto etnografico di un convegno di antropologia medica a Edimburgo e un’ulteriore riflessione su una ricerca fra un servizio territoriale di assistenza ad anziani e caregiver in Emilia-Romagna, questo articolo offre alcune indicazioni analitiche sull’antropologia del prendersi cura. Sostengo che la distinzione fra “cura” e “prendersi
cura” non rispecchi fino in fondo ciò che c’è davvero in gioco nelle pratiche di assistenza.
Per superare le ambivalenze che derivano dallo stesso linguaggio morale che adotta, è necessario che l’antropologia del prendersi cura sposti l’attenzione sui modi in cui è classificata la relazione fra l’accudimento nella sfera domestica e il sistema istituzionale dei servizi di assistenza. Altrimenti, il rischio è quello di perdere di vista la questione di come, in quali circostanze e con quale sostegno pubblico, vengono assegnate le responsabilità di assistenza.
Parole chiave: caregiving, ambivalenza, morale, assistenza, invecchiamento

Resilience as a Protective Factor Against Compassion Fatigue in Trauma Therapists by Daniel P. David MSW, New York State University at Stony Brook, 2002 Abstract Many adults in the United States experience posttraumatic stress disorder (PTSD) within their lifetimes. Researchers have identified compassion fatigue (CF), which debilitates mental health providers as a result of being exposed to their clients' traumatic experiences, as an occupational hazard. The purpose of this study was to examine whether a correlation exists between the presence of CF and the level of resilience. A confidential survey using the Connors-Davidson Resilience Scale, the Professional Quality of Life Scale Version 5, and a demographic questionnaire were given to graduate-level mental health clinicians who self-identified as routinely working with and/or treating trauma victims in the past 6 months. Participants were recruited from the New England Society for the Treatment of Trauma and Dissociation, the Metropolitan Atlanta Therapists Network, Dallas Chapter NASW listserv, and the Georgia Therapist Network. A multivariate analysis on the collected data was conducted to determine whether a relationship exists between the resilience scale and the subscales of CF within these population samples. According to study findings, there is a correlation between resilience and the 3 compassion fatigue subscales-CF, burnout, and compassion satisfaction. This study may lead to positive social change by helping guide clinicians to find ways to enhance resilience, and therefore, decrease risks of CF.

This article provides information on the care provided by caregivers to seniors with a long-term health condition, a disability or problems related to aging. It focuses on how the intensity and nature of the care vary depending on seniors’ type of housing. Four types of housing are examined: care facilities, supportive housing, private households separate from the caregiver, and private households shared with the caregiver.

Philosopher Nancy Fraser thinks much of the disadvantage women face in employment has to do with gender norms that structure the labor market. Also important is that many employers reward workers who relegate their care responsibilities to family members or the market. Fraser's proposal, the Universal Caregiver model, would build institutions on the assumption that everyone has important caregiving responsibilities. Fraser provides merely a sketch of this model, and its viability depends on consideration of the concrete policy proposals that would need to be in place. My project is to fill in Fraser's sketch and consider policies from other theorists working on the issue. I argue that the Universal Caregiver model is justified because caregiving is a basic need of persons as citizens and because current arrangements are unjust along gender lines.

Formelartade och mer schematiska konstruktioner hos personer med demens. I: Bianchi, Marco, Håkansson, David, Melander, Björn, Pfister, Linda, Westman, Maria & Östman, Carin (red.), Svenskans beskrivning 36. Förhandlingar vid trettiosjätte sammankomsten. Uppsala 25-27 oktober 2017. Uppsala: Institutionen för nordiska språk vid Uppsala universitet. S. 143-154.

In seeking ground-up understandings of heart health disparities
facing low-income Malay women in Singapore, this paper locates
their meanings of heart health. Their health narratives reveal the
insidious communicative and structural barriers women face. The
findings show how shame, conceptualized as malu, remains a
barrier to accessing health and help structures. Everyday food
insecurity and stress from caregiving while in impoverishment
also undermine heart health equity. The intersections of gender
and class reveal how caregiving can have a crippling effect on
health outcomes in the low-income context. Low-income women
face multiple burdens that impede heart health care and
management. Women’s heart health interventions should heed
how a culture of shame and structural manifestations of stress
and food insecurity prevent women in low-income settings from
seeking equitable health opportunities.

This study explored differential symptom endorsement on the Patient Health Questionnaire-9 (PHQ-9), associated item severity ratings, and assessed the impact of item complexity on caregiver responses between two samples of family dementia caregivers: an African-American (n = 8) and a non-Hispanic White comparison group (n = 6). Semi-structured interviews were performed to explore patterns of endorsement and symptom interpretation. The two groups responded in substantially different ways on three of the nine PHQ-9 items. The implications of both the qualitative and quantitative findings on assessing caregiver depression are discussed. Future directions for research on evaluation of family caregiver depression and instrument use/restructuring are also addressed.

A family caregiver provides unpaid assistance to a family member/friend with a chronic disease, illness or disability. The caregiving process can affect a caregiver's quality of life by reducing time for themselves, for other family members and for work. The 2000 Behavioral Risk Factor Surveillance Survey estimates that 16 % of adult American Indians (AIs) are caregivers. A 2012 survey collected knowledge and personal experience data from a random sample of Hopi men and women (248 men and 252 women). Self-identified caregivers answered questions on time spent caregiving, caregiver difficulties and services requested. Approximately 20 % of the 500 Hopi participants self-identified as caregivers (N = 98), with 56 % female. Caregivers in contrast to non-caregivers had a lower percentage of ever having a mammogram (86, 89 %), a higher percentage of ever having had a Pap smear test (89.1, 85.6 %), a prostate specific antigen test (35, 30.6 %) and ever having had a colonoscopy (51.2, 44 %). Almost 21 % of caregivers reported difficulty with stress and 49 % reported it as their greatest caregiver difficulty. More males (28.6 %) identified financial burden as the greatest difficulty than females (p = 0.01). Training on patient care was the service that caregivers would like to receive most (18.2 %). The percentage of Hopi's providing caregiving was similar to national averages, although among men, was somewhat higher than national data (44 vs. 34 %). Stress was identified as a difficulty, similar to national studies.

The current state of art report aims to enquire on the actual situation in Italy by combining a literature, policy and procedure review on the following topics: migrants and refugees’ employment & unemployment rates, as well as their educational status, theoretical and methodological approaches of migrants and refugees’ integration into the labour market; together with a field research analysis conducted through the delivery of  questionnaires and focus groups among migrants, refugees and stakeholders in Sicily.

Reder and Duncan’s well-known studies of the 1990s on fatal child abuse drew attention to how parental scripts regarding their children could dangerously distort relationships in ways that were sometimes fatal to children. This article reports on a new system for assessing the ‘meaning of the child to the parent’, called the Meaning of the Child Interview (MotC). Parents are interviewed using the established Parent Development Interview, or equivalent, and the transcript of the interview is then analysed according to parental sensitivity and likely risk to the child. The MotC constructs were developed from those used in observed parent–child interaction (specifically, the CARE-Index) and the form of discourse analysis used in the Dynamic Maturational Model – Adult Attachment Interview, allowing a more systemic and inter-subjective understanding of parenting representations than often put forward. This article discusses the theoretical background to the MotC, gives a brief review of similar measures and then introduces the coding system and patterns of caregiving. The validity of the MotC is addressed elsewhere.

This article develops the concept of the “social body” as a metaphorical representation of hierarchical relationships in Thailand, as well as the physical embodiment of social, religious, and political structures. To do so, I trace the symbolic coordinates of groups that correspond to conceptions of individual bodies, along with the habituated means of perceiving as part of a collective. I argue that conventional Thai social interactions involve active attention to and care of the “social body,” in which differential roles are necessary for group functioning. Ethnographic descriptions of social interactions in public and semi-private arenas depict the spontaneous and embodied root of moral action in these contexts. The values thus enacted, however, challenge normative ideals of distributive justice and open up questions about “care” for a social body that validates unequal power and resource distribution.

Training courses and workshops:
1. Training courses for elderly caregivers.
2. Intensive training courses in Geriatric Medicine and Gerontology (for physicians and for workers in the field of caring of the elderly).
3. Geriatric training program for the Surgical Specialties.
4. Training program in wounds, ostomy and continence care.
5. Geriatric problems and its relation with language and speech disturbance.

Grandparents are often a key source of care provision for their grandchildren, yet they are sidelined in caregiving research and policy decisions. We conducted a global, systematic review of the literature to examine the scope and quality of studies to date (PROSPERO database CRD42019133894). We screened 12,699 abstracts across 7 databases, and identified 206 studies that examined how grandparents influence child health and development. Indicators of grandparent involvement were contact, caregiving behaviors, and financial support. Our review focused on two research questions: how do grandparents influence child health and development outcomes, and what range of child outcomes is reported globally? We examined study design, sample characteristics, key findings, and outcomes pertaining to grandchildren's physical health, socio-emotional and behavioral health, and cognitive and educational development. Our search captured studies featuring grandparent custodial care (n = 35), multigenerational care (n = 154), and both types of care (n = 17). We found substantial heterogeneity in the data provided on co-residence, caregiving roles, resources invested, outcomes, and mechanisms through which "grandparent effects" are manifested. We identified two important issues, related to operationalizing indicators of grandparent involvement and conceptualizing potential mechanisms, leading to gaps in the evidence base. Currently, our understanding of the pathways through which grandparents exert their influence is constrained by limited data on what grandparents actually do and insufficient attention given to interpersonal and structural contexts. We present a conceptual framework to explicitly measure and theorize pathways of care, with a view to inform research design and policy implementation. We underscore the need for more robust data on three indicators of caregiver involvement-contact, behavior, and support-and for careful description of structural and interpersonal contexts in caregiving research.

This article describes caregivers’ perceptions of communication strategies that are useful in their care practice when assisting individuals with moderate and severe Alzheimer’s disease (AD) during the completion of activities of daily living (ADLs). A total of 10 formal caregivers participated in one-hour semi-structured focus group interviews (FGIs) conducted at two different long-term care (LTC) locations (n = 5 at each location). To identify the strategies caregivers perceived to be effective, content analysis was the primary method used to examine the FGI data. Particular attention was given to identifying the frequency and extensiveness in which caregivers made reference to communication strategies during the FGIs. Caregivers discussed a total of 33 strategies that they perceived to be useful when assisting residents with moderate and severe AD during the completion of ADLs. The majority of the communication strategies discussed (64%) were task-focused and the most frequently mentioned strategies included the use of negotiation and explaining one’s actions to the resident. Greeting the resident was the most frequently discussed social strategy. In addition, two emergent themes containing a total of 12 strategies were identified, with the most frequently mentioned being establishing eye contact, familiarity with the resident, and postponing the task. Caregivers’ perceived use of communication strategies indicates that person-centred dementia care is a central aspect to facilitating the completion of ADLs.

In this article, I examine the various meanings of Mexican and Central American migrant women's utilization of private food assistance programs. I present findings from 20 months of ethnographic fieldwork conducted between 2008 and 2011 with migrant women, public health workers, and staff and volunteers of food assistance programs in Santa Barbara County, California. I discuss the barriers undocumented women face in accessing formal health care and the social and moral obligations that underpin these women's role in feeding others. I also document the ways in which private food assistance programs are orienting toward a focus on health in service delivery, and how women depend on provisions from these programs to support feeding practices at home. I argue that these findings are significant for current engagement by critical medical anthropologists in studying framings of "the clinic" and cultural beliefs about "deservingness." © 2015 by the American Anthropological Association.

Theoretically, people who have the benefits of secure social attachments should find it easier to perceive and respond to other people's suffering, compared with those who have insecure attachments. This is because compassionate reactions are products of what has been called the caregiving behavioral system, the optimal functioning of which depends on its not being inhibited by attachment insecurity (the failure of the attachment behavioral system to attain its own goal, safety and security provided by a caring attachment . In a series of recent studies, we have found that compassionate feelings and values, as well as responsive, altruistic behaviors, are promoted by both dispositional and experimentally induced attachment security. These studies and the theoretical ideas that generated them provide guidelines for enhancing compassion and altruism in the real world.

Manuscripts on topics related to immigration, settlement, and cultural diversity in urban centres are welcome. Preference may be given to the publication of manuscripts that are the result of research projects funded through CERIS -The Ontario Metropolis Centre. All manuscripts must be submitted in both digital and hard-copy form, and should include an Abstract of 100-200 words and a list of keywords.

Caregiving is usually associated with adults’ responsibilities. Official statistics and research have demonstrated, however, that many children and young people in the global North and South have substantial, regular caring responsibilities for family members with chronic illnesses, impairments or other care needs. This chapter conceptualises children’s roles as ‘caregivers’ and the care work they do. It then analyses the available evidence on outcomes of children’s caregiving and the factors and processes influencing their involvement. While research reveals that caregiving may have positive as well as negative outcomes for children’s well-being, formal and informal safety nets are needed, especially in resource-limited settings, to alleviate children’s care work. Children’s and families’ experiences suggest that social protection measures and support for those being cared for as well as those providing care would help to ensure that caregiving does not have long-term negative impacts on children’s personal development, education, health, family relations, peer interactions, social participation, employment opportunities and socially expected transitions to adulthood.

This article explores the significance of disability for social justice, using Nancy Fraser’s theory of justice as a guideline. The article argues that the disability perspective is essential for understanding and promoting social justice, although it is often disregarded by critical thinkers and social activists. The article looks at three prominent strategies for achieving social justice under conditions of capitalism: economically, by decommodifying labour; culturally, by deconstructing self-sufficiency; and politically, by transnationalising democracy. The disability perspective reveals that decommodification of labour requires enhancement of disability support, deconstruction of self-sufficiency requires valorisation of disability-illuminated interdependence, and transnationalisation of democracy requires scrutiny of the transnational production of impairments. The article discusses each of these strategies in theoretical and practical terms by drawing on disability studies and Fraser’s analyses.

This cross-sectional study explored associations between attachment style and caregiving patterns in 125 couples with children in the United Kingdom. The Actor-Partner Interdependence Model was used to model for both actor (own) and partner attachment effects on caregiving. Attachment was measured along the dimensions of avoidance and anxiety, and caregiving was measured along the dimensions of proximity, sensitivity, cooperation, and compulsion. Results indicated that different combinations of individual and partner attachment scores predicted different dimensions of caregiving. Own attachment scores best predicted caregiving proximity, cooperation, and compulsion, whereas own and partner attachment predicted caregiving sensitivity. The implications of the findings, limitations, and suggestions for future research are discussed.

Native American children have frequently been overlooked in early childhood development and education literature, though they are part of demographic with some of the highest levels of documented educational and health disparities. The roots of disparities often occur early in life, so this study sought to address the gap in early childhood literature by investigating the phenomenon of raising healthy young Native American children. Using a phenomenological approach, this study addressed two questions: 1. What does it mean to raise culturally whole Native American children, birth through five years of age, in an urban context? 2. How do these important Native American skills and knowledge areas align with items on a federally-approved tool for monitoring young children’s development? Ten Native American caregivers from tribally diverse backgrounds (skewed more heavily Ojibwe) were interviewed, with each interview lasting from one to four hours. Close to 300 pages of transcripts were typed up. Wholistic, line-by-line, comparison, and relational levels of analysis identified themes answering the first question. Comparison was then made between participant comments from the line-by-line analysis and items on the Survey of Well-being of Young Children. Native American children were found to develop within four intersecting planes of existence—Child and Adult, Past and Present, Physical and Spiritual, and Native and Non-Native. A model of this developmental context is proposed, with five thematic examples—Historical and Ongoing Trauma, Cyclical Nature of Parenting, Passing on Living Culture, Healthy Educational Environments, and Healthy Spaces to Grow and Develop. When compared to items on the developmental screening tool, Native American caregivers had most overlap with items for a healthy home environment and motor and communication milestones. Distinct differences were noted between caregiver discussion and screening tool items in the social emotional domain. Further research on this area is needed with both a broader sample as well as to do validation work on developmental screening tools. It is important that practitioners, researchers, and policy makers keep in mind the great diversity of experiences of Native peoples and take time to get to know any individuals they work with to learn about their unique story.

Empathy reflects an innate ability to perceive and be sensitive to the emotional states of others coupled with a motivation to care for their wellbeing. It has evolved in the context of parental care for offspring as well as within kinship. Current work demonstrates that empathy is underpinned by circuits connecting the brainstem, amygdala, basal ganglia, anterior cingulate cortex, insula and orbitofrontal cortex, which are conserved across many species. Empirical studies document that empathetic reactions emerge early in life, and that they are not automatic. Rather they are heavily influenced and modulated by interpersonal and contextual factors, which impact behavior and cognitions. However, the mechanisms supporting empathy are also flexible and amenable to behavioral interventions that can promote caring beyond kin and kith.

Attachment with parents is central to a child's development. It is well established that the quality of this attachment in early childhood is a strong predictor of developmental and psychological functioning throughout the life span. One of the primary issues in custody evaluations is assessing the quality of the child's attachment to each parent and the parents' capacity to foster security and to consider what this might mean for short-and medium-term decisions about their care. The nature of attachment measures is summarized, and the combined use of three attachment-caregiving instruments in a custody evaluation is illustrated through the case of a toddler whose parents were engaged in a high-conflict divorce. The case study demonstrates how, in addition to standard clinical observations, including a set of attachment-based instruments with a standardized psychological test battery provided information critical to a recommendation for custody and parent visitation.

Discusión y Conclusiones
En los dos estudios de validación del cuestionario realizados en población española (De la Revilla, et al., 1991; Bellón et al., 1996) existe una total concordancia respecto a su asignación en los ítems 1, 6, 7, 8 y 10 (apoyo confidencial) y 3, 5 y 11 (apoyo afectivo). En nuestro grupo los ítems 1 y 11 cargan de manera diferente con respecto a los dos factores propuestos por estos autores. Cabe destacar que las inconsistencias aparecen en las preguntas de “recibir visitas de amigos y familiares” (que en nuestro caso parece estar más relacionado con el concepto de apoyo afectivo, entendido como las demostraciones de amor y empatía) y en “visitas al hogar en caso de enfermedad” (relacionado en el grupo de personas cuidadoras con el apoyo confidencial, definido como la posibilidad de contar con otras personas). Estos resultados pueden sugerir que en el contexto de los cuidados de larga duración las visitas de personas cercanas no constituyan tanto un apoyo para contar con ellas como en el  caso de la ayuda cuando la persona que cuida se encuentra enferma, y, por lo tanto, no pueden ocuparse del cuidado de la persona que depende de ellos.
Estos resultados muestran la importancia de adaptar el instrumento a las características de esta población

Background: Although many persons with severe dementia (PWSDs) are cared for at home by their family caregivers, few studies have assessed end of life (EOL) care experiences of PWSDs.
Objective: We present the protocol for the PISCES study (Panel study Investigating Status of Cognitively impaired Elderly in Singapore) which aims to describe the clinical course, health care utilization and expenditures for community-dwelling PWSDs; and perceived burden, coping, resilience, anticipatory and prolonged grief among their caregivers.
Methods: This ongoing multi-center prospective longitudinal study is recruiting primary informal caregivers of 250 PWSDs from major restructured public hospitals, community hospitals, home care foundations, and hospices in Singapore. Caregivers are surveyed every four months for two years or until the PWSD passes away and then at eight weeks and six months post-death to assess the bereavement of the caregiver. Survey questionnaires included validated tools to assess PWSDs’ quality of life, suffering, behaviours, functional status, resource utilisation; and caregiver’s satisfaction with care, awareness of prognosis, care preferences, resilience, coping, perceived burden, distress, positive aspects of caregiving, anticipatory grief and bereavement adjustment. We also conduct qualitative in-depth interviews with a sub-sample of caregivers. The survey data is being linked with medical and billing records of PWSDs.
Ethics and dissemination: The study has been approved by an ethics board. Results from the study will be disseminated through publications and presentations targeting researchers, policy makers and clinicians interested in understanding and improving EOL care for PWSDs and their caregivers.

This phenomenological study examined the lived experiences of 7 women caregivers, who were between the ages of 45 and 75. The research question was, “What is the lived experience of women between age 45 and 75 who feel eudaimonic purpose as caregivers?” Eudaimonic well-being is the satisfaction or gratification that comes from personal development, or participating in meaningful, important work. Lack of attention to the virtuous and positive dimensions of caregiving seriously skews perceptions of the caregiver experience and limits the ability to enhance theories of caregiver adaptation. Five common themes emerged that capture the experience of eudaimonic purpose in middle-aged women caregivers: family, dedication, and commitment; autonomy and purpose; self-acceptance and self-care; care and compassion for others; and positive self-identity and lower subjective age. A central theme of mindfulness emerged during the final interview as it related to their future endeavors.

This study examines the lived reality of women caregivers of older adults. Using a microethnographic approach and videographic data collection in the homes of five caregiver - care receiver dyads, the research provides a n ew account of family caregiving. Grounded in a conceptual framework of embodiment, as articulated by social theorists Pierre Bourdieu and Erving Goffman, the data illustrates that seemingly banal gestures and expressions expose the intimate, often hidden, reality of caregiving. The findings reveal a gendered caregiver habitus characterized by emotional labour, performance, body management, health divestment, and vacillating boundaries between the caregiver and care receiver. The project validates the everyday experiences of women caregivers, proposes recommendations for improved clinical practice, and bridges scholarship on caregiving and the sociology of the body.

With the growing life expectancy for individuals with intellectual and developmental disabilities, siblings will increasingly assume responsibility for the care of their brother or sister with intellectual and developmental disabilities. Using a 163-item survey completed by 757 siblings, the authors identified factors related to future caregiving expectations. Siblings expected to assume greater caregiving responsibility for their brother or sister with disabilities if they were female, had closer relationships with and lived closer to their brother or sister with intellectual and developmental disabilities, and were the lone sibling without a disability. Siblings who expected to assume higher levels of caregiving had parents who were currently more able to care for their brother or sister with disabilities. With a better understanding of who intends to fulfill future caregiving roles, support can be provided to these siblings.

First used to describe the weariness the public felt toward media portrayals of societal crises, the term compassion fatigue has been taken up by health professionals to name—along with burnout, vicarious traumatization, compassion stress, and secondary traumatic stress—the condition of caregivers who become “too tired to care.” Compassion, long seen as the foundation of ethical caring, is increasingly understood as a threat to the well-being of those who offer it. Through the lens of hermeneutic phenomenology, the authors present an insider’s perspective on compassion fatigue, its effects on the body, on the experience of time and space, and on personal and professional relationships. Accounts of health professionals, alongside examinations of poetry, images, movies, and literature, are used to explore the notions of compassion, hope, and hopelessness as they inform the meaning of caring work. The authors frame their exposé of compassion fatigue with the very Canadian metaphor of “lying down in the snow.” If suffering is imagined as ever falling snow, then the need for training and resources for safe journeying in “winter country” becomes apparent. Recognizing the phenomenon of compassion fatigue reveals the role that health services education and the moral habitability of our healthcare environments play in supporting professionals’ ability to act compassionately and to endure.

Following the seminal publications of The Weight of the World (1999) by Pierre Bourdieu and colleagues along with the edited collection of essays published under the title of Social Suffering , the concept of "social suffering" has acquired currency in contemporary social science as a means to refer us to lived experiences of pain, damage, injury, deprivation and loss. With reference to social suffering researchers aim to draw critical attention to how subjective components of distress are rooted in social situations and conditioned by cultural circumstance. Here a focus is brought to the social processes and cultural conditions that both constitute and moderate the experience of suffering. It is held that social worlds comprise the embodied experience of pain and that there are often occasions where individual experiences of suffering are also manifestations of social structural violence and political oppression. By recording cultural idioms of distress, researchers aim to unmask the human social condition in contexts of extreme adversity.