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Browsing by Subject "Caregiving"

Now showing 1 - 6 of 6
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    Extreme caregiving: an ethical analysis of narratives by parents
    (2013-12) Freitag, Lisa C.
    Home medical care for medically complex and intellectually disabled children is frequently prescribed by providers, but the consequences for the family of such care are rarely considered in full. It is recognized that at times the care required might become physically demanding and emotionally burdensome. However, I believe that this sort of caregiving often reaches extreme levels, making our continued reliance on family caregiving ethically problematic. This paper analyzes several novel-length narratives by parents of intellectually disabled children to look deeper into the lives effected by this complex form of home care. Building on the care ethics framework developed by Joan Tronto, I examine particularly the ways in which the parents perceive their caregiving duties and demonstrate Tronto's caregiving virtues of attentiveness, responsibility, competence and responsiveness. This work begins to theorize caregiving in a new way, revealing previously unrecognized ethical concerns raised by this sort of extreme caregiving.
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    Family caregiving, home medical devices, and the sociotechnical system: Bringing the biomedical sciences into the bioethics discourse
    (2013-08) Rosenstein, Benjamin E.
    Informal caregiving by family members has been a substantial, cost-effective resource for the medical system. More recently, complex devices have made it possible to sustain patient's lives at home in more acute situations for longer periods of time. The arguments supporting the use of home care devices have been predicated on improving patients' quality of life since patients want to live out their life in their home. Ethically, this has been advocated as a means by which medicine can support patient-autonomy. This assumes the patient had a choice in using these devices and, more broadly, that the family caregiver had any choice. Autonomy fails to distinguish that a patient's autonomous choice is based on the expectation of use and that family will provide care. I will argue that neither the care recipient nor caregiver has autonomy and that the relationship they share is far more important. This usual deference to patient-autonomy overlooks the caregiver, the true user, on whom the patient and the system is reliant. Pushing this cultural objective of sustaining autonomy are the home care technologies themselves through the force of the technological imperative. While we often conceive of technologies as neutral objects, I argue they are cultural artifacts reflecting social values and practices. These values are imbued in these technologies' development and design by biomedical scientists and engineers who create them. These same people, though, are separated from the values and needs of family caregivers, challenging the goals of home care. I will argue they should not be separated since they are not neutral but rather moral actors within the larger context of the medical sociotechnical system.
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    Health Outcomes of Family Caregivers: Examining the Role of Spirituality and Religion
    (2018-07) Trudeau, Stephanie
    It is estimated that there are nearly 40 million family caregivers actively providing care for a loved one with a chronic illness in the United States today (American Association for Retired Persons, 2015). This number is projected to double by the year 2050, as our nation’s baby boomers become recipients of this care (Family Caregiving Alliance, 2016; Pollard & Scommenga, 2014). Family caregivers are at higher risk for negative emotional (e.g., depression, anxiety) and physical (e.g., heart disease, cancer, diabetes, arthritis) health outcomes (Charles, Piazza, Mogle, Sliwinski, & Almeida, 2013; Li, Shaffer, & Bagger, 2015; Roth, Fredman, & Haley, 2015). The impacts that caregiving have on health outcomes are clear. Which factors put caregivers at higher risk for poor health outcomes is not as clear (Kane, 2011). What remains particularly understudied is how the spiritual and religious practices of caregivers influence their personal mental and physical health. This study advanced a secondary analysis on a longitudinal sample of caregivers aimed to understand how use of spirituality impacts mental and physical health outcomes. This subset of prospective data was taken from the National Survey of Midlife Development (n = 89), in 2004-2006, and 2014-2015. A predictive model showed that caregivers’ religious resources had an impact on their mental health. More specifically, use of private religious practices showed more positive mental health outcomes over other variables of religious resources. Implications for clinical practice and research are discussed.
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    A Longitudinal Analysis of the Effects of the NYU Caregiver Intervention-Adult Child on Subjective Health
    (2020-11-10) Albers, Elizabeth, A
    Objective: The present study examined whether the NYU Caregiver Intervention for Adult Children (NYUCI-AC) influenced the subjective health of adult child family caregivers of persons with dementia. Methods: A randomized controlled trial, conducted between 2006 and 2012, compared outcomes among a psychosocial intervention group to usual care controls. One hundred and seven adult child caregivers of persons with dementia were included in the sample (n=54 assigned to the intervention group; n=53 assigned to the usual care control group). Participants were assessed up to eight times; every four months in the first year, then every six months afterwards. The current study focused on the effects of the NYUCI-AC on changes in self-rated health over the study period. Results: Growth curve models found that self-rated health among intervention group and control group caregivers did not differ over the study period. No effect of the intervention on self-rated health emerged over time after controlling for baseline differences in gender and satisfaction with social support. Conclusions: The NYUCI-AC is a multicomponent psychosocial intervention that provides counseling and support to adult child caregivers and did not alter subjective health over time.
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    Roots and Seeds: Sewing Healthy Development for Young Native American Children
    (2018-10) Blyly-Strauss, Mina
    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.
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    Rural family caregiving for children with complex chronic conditions: a grounded theory study.
    (2012-06) Rose, Diane Kay
    Although rural families of children with complex chronic conditions (CCCs) face many of the same caregiving challenges urban families face, they may face additional, unique challenges. Geographical distance from specialists limits access to care and can contribute to compartmentalization of services and increased strain on the family. Relatively little is known about how rural family caregivers of children with CCCs manage complex care without many of the resources that are available to urban families. Previous research on family caregiving for children with CCCs has focused primarily on urban and suburban families; rural families have been underrepresented. The aims of this study were to (a) identify and describe how rural family caregivers manage caregiving for children with complex chronic conditions, and (b) develop a theoretical model of rural family caregiving for children with complex chronic conditions. Principles of family-centered care and an ecological perspective provided the conceptual framework for this grounded theory study. Semi-structured, in-depth interviews were conducted with nine primary family caregivers of children with CCCs who resided in rural counties in northwestern Minnesota. Analysis of data led to identification of the central category, Managing with Limited Resources, and development of a theoretical model of rural family caregiving for children with CCCs. Recommendations are made for improving care to children with CCCs and their families in rural, underserved areas.