The biographical challenge of caring (original) (raw)
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HYPOTHESIZING EDUCATIONAL PATHWAYS ACCOMPANY THE BIOGRAPHICAL TRANSITIONS OF EASTERN EUROPE’S CARERS
In the last thirty years, Italy has experienced an intense flow of immigration from different areas. The regional data (VI° Regional Conference on Immigration) show that Campania is no more a transit region. An interesting feature of contemporary migration is the large percentage of highly educated and qualified people: immigrants with high level of education and training came mostly from Eastern Europe. Italy, moreover, is characterized by a high percentage of women among immigrants, which has increased in recent years, particularly for people from some countries (in 2006, for example, a percentage between 65% and 82% of the foreign workforce from countries of east such as Poland, Ukraine, Moldova, are women); among the immigrant there is a high percentage of women working both as housekeeper and as caregivers. This paper aims to offer a reflection on the training and orientation training of those migrants in Campania who carry out the tasks of caregivers. The figure of the maid or nanny makes up for the lack of an often disorganized welfare system, to meet the needs of a population, as the Italian, where the negative trend of birth adds up to a constant aging of the population and the progressive increase in longevity which makes constant assistance of the elderly necessary and irreplaceable in a situation of unsustainable spending at the individual level, weighing in fact entirely on public sector budgets of social assistance. Women are institutionally recognized as a determinant factor in maintaining the balance of socioeconomic impacts, exactly referring to their key role in the world of production, for their subjectivity, their history, their biographical experience, their desires and legitimate expectations. The researcher Schlosseberg (Schlosseberg, 2005) designed and implemented specific programs and interventions of training in which she alternates individual intervention to work in teams. Often to face transition phases lived by immigrant women, it needs to adopt a real formative advisory, able to implement the skills of self-determination of adult in training (Biasin, 2012). In a formative perspective, the moments of transition propose the revival of a type of subjectivity, which is able to reflect an active and creative inner (Paul, 2002). Innovative changes are, therefore, required in orientation and training in work fields: it needs to introduce structural changes to allow the professionals involved in relationships of care and assistance to take a proactive approach that will enable them to govern the biographical processes. The activities of training and advisory, aimed to adults, are based on dimensions of lived experience in order to individualize the transition, coupled with social and relational context of reference. Keywords: Biographical transition, transformative change, awareness.
Narratives of Identity and the Informal Care Role (unpubished PhD Thesis)
Questions of continual and/or repetitive informal caring and the part childhood, development and personality play in adult caring roles form the background of the research's focuses on why individuals gravitate toward the informal care role and why they continue to care in the face of overwhelming obstacles. The investigation explores how informal carers create meaning in their everyday lives expressed through actions. Biographies are seen as representations close to those actions, therefore, a biographical narrative interpretive method is proposed to address the questions.
SHE IS A VERY SPECIAL PERSON: MALE CAREGIVER IN THE INTERSECTION BETWEEN INFORMAL AND FORMAL CARE
Journal of Spatial and Organizational Dynamics, Vol. II, Issue 2, 2014
This paper presents the story of a Norwegian man in his mid-70s, primary caretaker for his wife who suffers from Alzheimer's disease. Focus is on the cooperation with home-based public health-care services. The case is part of a larger qualitative research project on the topic. The story has come into being through narrative interviews followed up with telephone conversations and is analyzed with Antonovsky's Sense of Coherence as a frame of reference. Three topics are highlighted: 1) The carer's journey during the time of his wife's illness; 2) His description and construction of meaning and ways of coping; 3) The interaction between him as a caregiver and professional health workers. The research project aims to highlight the rationality of caring facing the organizational/ bureaucratic framework conditions of home-based public health care. As the caregiver is watching his loved one being changed into someone who is unrecognizable he needs to adjust to a new reality of which a working relationship with home-based public health care is an element. Concerning the latter, a very important factor is the respect for the uniqueness of the couple's story and situation, as well as the acknowledgement of the caregiver's expertise – or lack thereof.
Narrative and its potential contribution to disability studies
Disability & Society, 2008
This article seeks to expand our understanding of narrative and the analysis of stories researchers invite and collect in the domain of disability studies. What narrative inquiry is and various reasons why researchers might opt to choose to turn to narratives are highlighted. Painting with broad strokes, narrative analysis is then considered before a typology of different ways in which stories can be analysed is offered. Illuminated by the typology are two contrasting standpoints on narrative analysis (storyteller and story analyst) and three specific methods (structural, performative, and autoethnographic creative analytic practices) that each standpoint might use to analyse the whats and hows of stories. The article closes by suggesting that researchers might consider using a variety of analyses in order to assist us to understand the complexities of the social world in diverse ways.
Living with disability: care, rights and relational personhood
Australian Journal of Human Rights 19 (1), 2013
In this article, I argue that rights-based claims deriving from the experience of disability have to be understood from the perspective of relational forms of personhood grounded in the developmental and embodied specificities of impairment. I draw on an anthropological tradition of the critique of individualism and development of models of relational personhood grounded in the analysis of kinship-based social systems, with a particular focus on the work of Marilyn Strathern. I focus on the substantive contexts of care, therapy and cure as sites of contestation between activists and parents, which expose a dialectical relationship between rights and personhood with implications for an understanding of agency. I also consider these as moments in the unfolding lives of those diagnosed with a disability.
Critique and Humanism Journal, 2021
This article discusses the relationships between three concepts that are key for contemporary disability policies: social model of disability, independent living, and care. The first part explores the impact of the social model and independent living on the UN Convention on the Rights of Persons with Disabilities, as well as the conflict between the social model and independent living, on the one hand, and the idea of ‘care’, on the other. This conflict is addressed by making recourse to studies of the ‘ethics of care’ and by introducing a distinction between ‘paternalist care’ and ‘egalitarian care’. In the second part of the article, these concepts are used in an analysis of contemporary Bulgarian disability policies. This includes a critique of the barriers to the independent living faced by disabled people in Bulgaria, and more specifically, of the continuing institutionalization of disabled Bulgarians, the lack of adequate personal assistance, the difficulties with providing access to inclusive education for disabled children, and the medical assessment of disability. The conclusion emphasizes that the approach of ‘paternalist care’ still dominates in Bulgarian disability policies. This significantly complicates the attempts to apply the ‘ethics of care’ in the Bulgarian context in a way that affirms disabled people’s rights.
Phenomenology and Disability Studies
Springer Encyclopedia of Phenomenology
This essay introduces the field of disability studies to readers of phenomenology and highlights areas where both enterprises can benefit from theoretical engagement with each other. I begin by introducing the origins of disability studies and the field’s rejection of biomedical approaches to disability. I then review some sociopolitical interpretations of disability elaborated in response to the medical model. By reframing disability in social terms, these accounts interrogate the relationship between material embodiment and the social construction of normalcy. Phenomenology also dispenses with a view of disability as biological fact and studies disability, instead, from the perspective of being in the world. The phenomenological model of disability foregrounds the spatiotemporal, affective, sensory, and intercorporeal dimensions of disability. This descriptive enterprise yields important insights about the ways in which disabled embodiment is lived and challenges putatively universal accounts of bodily intentionality, intersubjectivity, perceptual behavior, and temporal and spatial awareness. But phenomenology’s encounter with disability does not end here. A meaningful engagement with disability must involve a critical assessment of the potential and limits of phenomenology itself. For this, phenomenology’s tools must be disoriented. I submit that a phenomenology of disability is most fruitfully realized through the disorientations of crip phenomenology.
Clara: A Phenomenology of Disability
American Journal of Occupational Therapy, 2003
A phenomenological approach was used to describe the lived experience of disability of a woman who sustained a head injury 21 years ago. Data were collected through 11 face-to-face interviews and 72 e-mail messages over the period of 11 weeks. An iterative, fluid process of questioning, information-giving, analysis, and verification was characteristic of the whole study, alternating between analysis of the particular and analysis of the general. Through a process of phenomenological reduction, each interview transcript and e-mail message was divided into meaning units that denoted shifts of meaning. Similar meaning units within a transcript or message were then grouped and summarized in a phrase or word. As new meaning units emerged, additional interviews and e-mail exchanges took place in order to obtain an exhaustive description of the experience of disability. All meaning units obtained from this iterative process finally were “horizonalized” into meaning clusters of nonrepetitiv...
Informal care as relationship: the case of the Magnificent Seven
Journal of Psychiatric and Mental Health Nursing, 2006
Continual and/or repetitive informal caring and the part childhood, developmental and socially constructed identity play roles in adult informal care, form the background to the questions of why individuals gravitate toward such relationships and why they often continue to care in the face of overwhelming obstacles. A synthesis of the literature is presented, leading to personal histories as a method of discovery. The Biographic Narrative Interpretive Method’s minimalist interview technique is put forth as the key data-gathering event. Reflecting teams, underpinned by hermeneutics or interpretive phenomenology, are used for the analyses. Data from in-depth, biographic interviews with two informal carers (a mother and her adult son) from a seven-member, three-generational family are presented. The study reveals that this family defines disability as a status that they share in common: disability demonstrates relationships and keeps the family together, but discourages mobility. It is suggested that often-unmet childhood needs propelled these particular individuals into demonstrating those needs as adults by assuming informal care relationships. The case is made that their biographies impact upon their management of health and enduring illnesses within caring roles. Further biographic research within the caring profession is recommended.