Extreme Caregiving

Author(s):  
Lisa Freitag

Raising a child with multiple special needs or disabilities is a time-consuming and difficult task that exceeds the usual parameters of parenting. This book examines all the facets of that task, from the better-known physical, financial, and emotional burdens to the previously invisible moral work involved. Drawing from narratives written by parents of children with a variety of special needs, academic research in ethics and disability, and personal experience in pediatrics, this book begins to recognize the moral consequences of providing long-term care for a child with complex needs. Using a virtue ethic framework based on Joan Tronto’s phases of care, it isolates the various tasks involved and evaluates the moral demands placed on the parent performing them. Raising a child with special needs requires an excess of attentiveness, responsibility, competence, and responsiveness, and demands from the parent a reassessment of their personal and social lives. In each phase, moral work must be done to become the sort of person who can perform the necessary caregiving. Some of the consequences are predictable, such as the emotional and physical burden of constant attentiveness and numerous unexpected responsibilities. But the need for competence, which drives an acquisition of medical knowledge, has not previously been analyzed. Nor has there been recognition of the enormous moral task of encouraging identity formation in a child with intellectual delays or autism. For a child who cannot attain independence, parents must continue to provide care and support into an uncertain future.

2006 ◽  
Vol 11 (2) ◽  
pp. 40-49 ◽  
Author(s):  
Jackie Goode

This paper examines the institutional identity formation of contract research staff in the context of the Taylorisation of research knowledges. The author has been a contract researcher for many years, after initially training and practising as a Probation Officer. She makes links between her social work training, and her current practice as a qualitative researcher. Drawing on her experience of working on a variety of different projects, at a number of different institutions, and providing illustrative examples from projects in sociology, social policy, health, and education, she reflects on the implications of the current social organization of academic research both for professional research practice and for researcher identity. There is a paradox in the way that contract research staff accrue a wealth of experience of how research is organised and conducted in different contexts, a repertoire of skills, and a vast volume of various kinds of ‘data’, whilst remaining vulnerable and marginalized figures within the academy, with few opportunities for professional development and advancement. She outlines a number of strategies she has employed in the preservation of the ‘research self’, and concludes by suggesting that the academy has much to learn about the effective management of ‘waste’, as embodied by researchers’ selves and their data, consequent upon the Taylorisation of research work.


2021 ◽  
pp. 108482232110569
Author(s):  
Anne Mueller ◽  
Lesley Thao ◽  
Olivia Condon ◽  
Daniel Liebzeit ◽  
Beth Fields

The U.S. population of older adults living with dementia is projected to double by 2060. They rely on over 16 million family and unpaid caregivers to provide for their increasingly complex needs and care transitions. Caregivers frequently feel underprepared and without adequate support or access to resources. This systematic review seeks to identify the needs of family and unpaid caregivers of older adults living with dementia across various care settings in the U.S. A systematic search was conducted to identify articles pertaining to the needs of caregivers of older adults living with dementia. The data extraction tool was developed using aspects from the Care Transitions Framework and the Family Caregiver Alliance. Data were organized based on 3 domains of caregiver needs and the care setting(s) of the older adults living with dementia and their caregivers. A total of 31 articles were eligible for inclusion. The majority met the MMAT screening criteria, but more than half only met 2 or less of the 5 quality criteria. Caregivers’ needs were identified in the care settings of home/community-residing, assisted living, long-term care, skilled nursing, and memory care. Most articles either did not specify a care setting or included more than 1 and did not report the findings separately. Caregivers in each care setting, except memory care, identified needs in all 3 of the following domains: (1) social support—formal and informal, (2) confidence, competence, and strengths in the caregiving role, and (3) values and preferences.


2021 ◽  
Author(s):  
John Muñoz ◽  
Samira Mehrabi ◽  
Yirou Li ◽  
Aysha Basharat ◽  
Jennifer Boger ◽  
...  

BACKGROUND Advancements in supporting personalized healthcare and wellbeing using virtual reality (VR) has created opportunities to use immersive games to support a healthy lifestyle for persons living with dementia (PLWD) and mild cognitive impairment (MCI). Collaboratively designing exercise-video games (exergames) as a multi-stakeholder team is fundamental to creating games that are attractive, effective, and accessible. OBJECTIVE This research explores the use of participatory design methods that involve PLWD in long-term care facilitates, exercise professionals, content developers, game designers, and researchers in the creation of VR exergames targeting physical activity promotion for PLWD/MCI. METHODS Conceptualization, collaborative design, and playtesting activities were carried out to design VR exergames to engage PLWD in exercises to promote upper-limb flexibility, strength and aerobic endurance RESULTS Our results demonstrate how different stakeholders contribute to the design of VR exergames that consider/complement complex needs, preferences, and motivators of an underrepresented group of end-users as well as game design elements that reflect feedback for therapists and researchers. CONCLUSIONS This study provides evidence that collaborative multi-stakeholder design results in more tailored and context-aware VR games for PLWD. The insights and lessons learned in from this research can be used by others to co-design games, including remote engagement techniques that were used during the COVID-19 pandemic.


Author(s):  
Scott Pacey

The academic research of the Catholic priest Du Erwei generated strong responses from Buddhists. Du claimed that Buddhism was descended from earlier lunar religion—and thus, implicitly, that it embodied a “primitive” stage of religious thought. As an anthropologist and scholar affiliated with National Taiwan University, Du drew from voluminous academic sources, meaning that his theory demanded a rigorous Buddhist response. This chapter discusses Yinshun’s writings from the period, which aimed at showing how fundamental Buddhist beliefs transcended history and that Christianity itself was, as Du Erwei had claimed about Buddhism, historically-derived. Modern historiographical forms thus increasingly paralleled the appeal to values, showing their importance for identity formation and as a standard for religious “truth”.


Author(s):  
Luppicini Rocci

Vanderburg’s (2005) Living in the Labyrinth of Technology, describes the seemingly ambivalent state of life and meaning within a technological society. The ubiquity and invisibility of advancing information and communication technologies (ICT’s) challenges individuals sense of self and society, and their understanding of how meaning is communicated, by whom, for what purpose, and with what outcomes. The convergence of information, communication, and technology has become an important concern in academia as is apparent in the intersecting interests of technology studies, information studies, and communication studies in areas related to the role of technology in social interaction, meaning creation, identity formation, culture, and information exchange. This intersection of fields is partly due to the convergence of information and communications with advancing technological innovation. This has given rise to the ever-expanding convergence in academic research within communications and technology studies. This is exemplified through an amassing body of research publications focusing on technology, information, and communication, along with continued growth of technology and communication oriented research activities carried out within professional associations (Society for Social Studies of Science [4S] and the European Association for the Study of Science and Technology [EASST], International Communication Association, Canadian Communication Association).


2019 ◽  
Vol 32 (4) ◽  
pp. 584-599
Author(s):  
Emily Maile ◽  
Judy McKimm ◽  
Alex Till

Purpose “Becoming” a doctor involves the acquisition of medical knowledge, skills and professional identity. Medical professional identity formation (MPIF) is complex, multi-factorial and closely linked to societal expectations, personal and social identity. Increasingly, doctors are required to engage in leadership/management involving significant identity shift. This paper aims to explore medical professional identity (MPI) and MPIF in relation to doctors as leaders. Selected identity theories are used to enrich the understanding of challenges facing doctors in leadership situations and two concepts are introduced: medical leader identity (MLI) and medical leader identity formation (MLIF) and consideration given to how they can be nurtured within medical practice. Design/methodology/approach A rapid conceptual review of relevant literature was carried out to identify a set of relevant concepts and theories that could be used to develop a new conceptual framework for MLI and MLIF. Findings MLIF is crucial for doctors to develop as medical leaders, and, like MPIF, the process begins before medical school with both identities influenced, shaped and challenged throughout doctors’ careers. Individuals require support in developing awareness that their identities are multiple, nested, interconnected and change over time. Originality/value This paper draws on concepts from wider literature on professional identity, in relation to how doctors might develop their MLI alongside their MPI. It offers a new perspective on MPI in the light of calls on doctors to “become and be healthcare leaders” and introduces the new concepts of MLI and MLIF.


2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S473-S474
Author(s):  
Charlene H Chu ◽  
Renee Biss ◽  
Afroza Sultana ◽  
Amelie Gauthier-Beaupré ◽  
Arezoo Talebzadeh

Abstract Introduction: Institutionalized older adults have high-rates of mobility decline resulting in reduced quality of life and increased dependency. Given the ageing population, there has been a proliferation of exergaming technology targeting older adults to maintain their physical activity (PA) levels and prevent decline. However, it is unclear if exergaming is effective to maintain or improve the PA of institutionalized older adults. Method: Four databases (MEDLINE/CINAHL/PsycINFO/Compendex) were systematically searched (key terms like “nursing homes”, exergaming”). Quantitative manuscripts examining the effects of exergaming on PA measures of institutionalized older adults published in English between 2006-present were eligible. Virtual reality was excluded from the search. No meta-analysis was conducted due to hetereogeneity of the results. Results: 11 studies were included from a search that yielded 208 results. The exergaming platforms that were used the most were the Kinect and Wii. The most commonly used PA measures were the Berg Balance Scale and the Timed-up-and-Go (n=4 studies) with no other measures being used in more than one study. Interventions ranged in exercise (e.g. cognitive-motor training, strength training, balance, etc), frequency, duration, and modality. Study designs were also heterogeneous. Articles were of very poor to poor quality. There was minimal reporting on adverse events. Older adults with cognitive impairment were commonly excluded. Challenges in current technology and studying this group are highlighted. Conclusion: Exergaming may be promising to maintain PA but more robust research is needed. More exergaming technology designed for long-term care to meet the specific complex needs of this population is warranted.


2012 ◽  
Vol 11 (3) ◽  
pp. 331-343 ◽  
Author(s):  
Michele Foster ◽  
Paul Henman ◽  
Jennifer Fleming ◽  
Cheryl Tilse ◽  
Rosamund Harrington

Internationally, over the past two decades the theme of personalisation has driven significant reforms within health and social care services. In the Australian context, the principles of ‘entitlement based on need’ and ‘personalisation’ frame the proposed National Disability Long-Term Care and Support Scheme (LTCSS). In this article, we critically examine the interpretations and ambiguities of need and personalisation. We consider the administrative complexities of applying these principles in practice and the uncertainties about the roles of state and the market, and use individual case examples to illustrate areas of potential tension. Whether principles translate to deliver personalised services and avoid harmful trade-offs between access, equity and choice is the true test of social policy.


2018 ◽  
Vol 40 (3) ◽  
pp. 663-689 ◽  
Author(s):  
Nicole K. Dalmer

AbstractFamily care-givers are increasingly expected to find, understand and use information to meet the complex needs of older adults in their care. A significant number of studies, however, continue to report that care-givers’ information needs are unmet. Following Arksey and O'Malley's scoping review framework, I examined 72 articles for the range and extent of available research on the information work done by family care-givers of community-dwelling older adults living with dementia. To untangle the complex relationship between information and care, this scoping review maps out (a) the ways scholarly literature conceptualises the informational components of family care-givers’ work and (b) the degree to which scholarly research acknowledges these components as work. An institutional ethnography inflection enhanced the scoping review framework, enabling the privileging of lived experiences, questioning of assumptions of language used, attending to authors’ positioning and highlighting care-givers’ information work made invisible throughout the processes of academic research.


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