Sleep Patterns and Parents’ Experience in Caring for Young Children Newly Diagnosed with Juvenile Idiopathic Arthritis

Thesis (Ph.D.)--University of Washington, 2016-05

Caregiver burden, time spent caring and health status in the first 12 months following stroke

Objective: To quantify time caring, burden and health status in carers of stroke patients after discharge from rehabilitation; to identify the potentially modifiable sociodemographic and clinical characteristics associated with these outcomes. Methods: Patients and carers prospectively interviewed 6 (n = 71) and 12 (n = 57) months after discharge. Relationships of carer and patient variables with burden, health status and time analysed by Gaussian and Poisson regression. Results: Carers showed considerable burden at 6 and 12 months. Carers spent 4.6 and 3.6 hours per day assisting patients with daily activities at 6 and 12 months, respectively. Improved patient motor and cognitive function were associated with reductions of up to 20 minutes per day in time spent in daily activities. Better patient mental health and cognitive function were associated with better carer mental health. Conclusions: Potentially modifiable factors such as these may be able to be targeted by caregiver training, support and education programmes and outpatient therapy for patients.

The costs of caring for patients in a tertiary referral Australian intensive care unit

We determined the direct cost of an Intensive Care Unit (ICU) bed in a tertiary referral Australian ICU and the cost drivers thereof, by retrospectively analysing a number of prospectively designed Hospital- and Unit-specific electronic databases. The study period was a financial year, from 1 July 2002 to 30 June 2003. There were 1615 patients occupying 5692 fractional occupied bed days at a total cost of A$15,915,964, with an average length of stay of 3.69 days (range 0.5-77, median 1.06, interquartile range 2.33). The main cost driver not incorporated into this analysis was blood products (paid for centrally). The average costs of an ICU day and total stay per patient were A$2670 and A$9852 respectively. Staff-related charges were 68.76%, with consumables related expenditure making up 19.65%, clinical support services 9.55% and capital equipment 2.04%. Overtime charges and nursing agency staff were 19.4% of staff-related charges (2.9% for agency staff), 3.9% lower than expenditure associated with full-time employment charges, such as pension and leave. The emergency nature of ICU means it is difficult to accurately set a nursing establishment to cater for all admissions and therefore it is hard to decide what is an acceptable percentage difference between agency/overtime costs compared with the costs associated with full-time staff appointments. Consumable expenditure is likely to increase the most with new innovation and therapies. Using protocol driven practices may tighten and control costs incurred in ICU.

Critical approaches to care:understanding caring relations, identities and cutures

What does ‘care’ mean in contemporary society? How are caring relationships practised in different contexts? What resources do individuals and collectives draw upon in order to care for, care with and care about themselves and others? How do such relationships and practices relate to broader social processes? Care shapes people’s everyday lives and relationships and caring relations and practices influence the economies of different societies. This interdisciplinary book takes a nuanced and context-sensitive approach to exploring caring relationships, identities and practices within and across a variety of cultural, familial, geographical and institutional arenas. Grounded in rich empirical research and discussing key theoretical, policy and practice debates, it provides important, yet often neglected, international and cross-cultural perspectives. It is divided into four sections covering: caring within educational institutions; caring amongst communities and networks; caring and families; and caring across the life-course. Contributing to broader theoretical, philosophical and moral debates associated with the ethics of care, citizenship, justice, relationality and entanglements of power, Critical Approaches to Care is an important work for students and academics studying caring and care work in the fields of health and social care, sociology, social policy, anthropology, education, human geography and politics.

Co-constructed caring research and intellectual disability:an exploration of friendship, intimacy and being human

For this paper, emotional and socio-political questions lie at the heart of relationships in understanding intellectual disability and what it is to be a human. While the sexual and intimate is more often than not based on a private and personal relationship with the self and (an)other, the sexual and intimate life of intellectually disabled people is more often a ‘public’ affair governed by parents and/or carers, destabilizing what we might consider ethical and caring practices. In the socio-political sphere, as an all-encompassing ‘care space’, social intolerance and aversion to difficult differences are played out, impacting upon the intimate lives of intellectually disabled people. As co-researchers (one intellectually disabled and one ‘non-disabled’), we discuss narratives from a small scale research project and our personal reflections. In sociological research and more specifically within disability research it is clear that we need to keep sex and intimacy on the agenda, yet also find ways of doing research in a meaningful, caring and co-constructed way.

Caring for the Caregiver: Emotional Challenges of Pediatric Palliative Care Nurses

Pediatric Palliative Care (PPC) nurses provide quality-of-life for critically ill children. This paper looks at how PPC nurses cope with caregiver emotions within the conceptual framework of emotional labor and emotional intelligence.

Caring and being cared -for: Perceptions of adolescent males at -risk for school failure

This qualitative study used grounded theory methods and purposeful sampling to explore perceptions on caring and being cared-for. Twenty-four adolescent male participants, identified as at-risk for school failure, completed a two phase interview process exploring these phenomena within three relationships; the relationship with the friend, with the most caring person they knew and with the teacher they felt cared for them. ^ Each participant was asked a predetermined set of open questions in an initial semi-structured interview. In addition each participant was encouraged to explore his own reflections on caring. A second interview allowed for member checking and for the participant to continue sharing his meaning of caring and being cared-for. ^ Line by line analysis with open, axial and selective coding was applied to interview transcripts along with a constant comparative method. Results indicated that the core category integrating all other categories was attachment bonding. Participants' stories manifested characteristics of proximity seeking, secure base, safe haven and distress upon involuntary separation from an attachment figure. ^ Strategies facilitating attachment bonding were influenced by the power positions of the relational players. Participants responded positively to the one-caring when they felt cared-for. Results further indicated that participants did not need to feel a sense of belonging in order to feel cared-for. Teacher behaviors indicating openness for authentic connections with students were specific to teacher's friendliness and professional competence. Teachers who nurtured feelings of being cared-for were uncommon in the participants' educational experience. ^ The number of adolescent males leaving high school prematurely is both a personal problem and a social problem. Despite a “mask” of indifference often exhibited by adolescent males at-risk for school failure, teachers might consider the social/emotional needs of these students when implementing the curriculum. In addition, policy makers might consider the social/emotional needs of this vulnerable population when developing programs meant to foster psychological well-being and connectedness for adolescent males at-risk for school failure. ^

Nursing case management : a new perspective to caring for patients with hip fracture

Nursing Case Management has motivated nurses to examine the effects of care provided to patients, and to devise means of improving this care. The success of this nursing care delivery model is well documented among a variety of acute and chronically ill patients. Utilizing nonparametric ANOVA for comparison of two means, this study investigates the outcome of the implementation of a nursingcase management model on an orthopedic unit of a local hospital. A convenience sample (N=149) of hip-fracture patients for two separate eight months charting periods were used. The first period was pre-case management and the second period was after the implementation of nursing managed care on the unit. Results suggested that nursing case management was effective in reducing the total length of hospital stay and post-operative days significantly.