End-of-life care in the intensive care unit : a systematic review of qualitative studies investigating the experiences and perceptions of the patient's family

Review question/objective The review objective is to synthesise the best available evidence on experiences and perceptions of family members of intensive care unit patients on the adequacy of end-of-life care, where life-support modalities have been withheld or withdrawn. Inclusion criteria Types of participants This review will consider studies that report on the experiences and perceptions of patients’ families on EOLC in the ICU, where life-support modalities have been withheld or withdrawn. The family is defined as “those who are closest to the patient... the family may include the biological family, family by acquisition, and the family of choice and friends”. Phenomena of interest The phenomena of interest for this review are the patients’ families experiences, perceptions or views on the adequacy of EOLC delivered in the ICU, where life-support modalities were withheld or withdrawn. These experiences may refer to the following views on domains of care considered important at the end-of-life in the ICU, which have been described already in the existing literature: timely, consistent, and compassionate communication, clinician availability, clinical decision making based on patients’ preferences, goals and values, physical care implemented to maintain patient comfort, holistic interdisciplinary care and bereavement care for families of patients who died.

The uber-assumption family

We offer an exposition of Boneh, Boyen, and Goh’s “uber-assumption” family for analyzing the validity and strength of pairing assumptions in the generic-group model, and augment the original BBG framework with a few simple but useful extensions.

The impact of funding deadlines on personal workloads, stress and family relationships : a qualitative study of Australian researchers

Objective To examine the impact of applying for funding on personal workloads, stress and family relationships. Design Qualitative study of researchers preparing grant proposals. Setting Web-based survey on applying for the annual National Health and Medical Research Council (NHMRC) Project Grant scheme. Participants Australian researchers (n=215). Results Almost all agreed that preparing their proposals always took top priority over other work (97%) and personal (87%) commitments. Almost all researchers agreed that they became stressed by the workload (93%) and restricted their holidays during the grant writing season (88%). Most researchers agreed that they submitted proposals because chance is involved in being successful (75%), due to performance requirements at their institution (60%) and pressure from their colleagues to submit proposals (53%). Almost all researchers supported changes to the current processes to submit proposals (95%) and peer review (90%). Most researchers (59%) provided extensive comments on the impact of writing proposals on their work life and home life. Six major work life themes were: (1) top priority; (2) career development; (3) stress at work; (4) benefits at work; (5) time spent at work and (6) pressure from colleagues. Six major home life themes were: (1) restricting family holidays; (2) time spent on work at home; (3) impact on children; (4) stress at home; (5) impact on family and friends and (6) impact on partner. Additional impacts on the mental health and well-being of researchers were identified. Conclusions The process of preparing grant proposals for a single annual deadline is stressful, time consuming and conflicts with family responsibilities. The timing of the funding cycle could be shifted to minimise applicant burden, give Australian researchers more time to work on actual research and to be with their families.

Partial mediation role of self-efficacy between positive social interaction and mental health in family caregivers for dementia patients in Shanghai

We explored the mediation effect of caregiver self-efficacy on the influences of behavioral and psychological symptoms (BPSD) of dementia care recipients (CRs) or family caregivers’ (CGs) social supports (informational, tangible and affectionate support and positive social interaction) on CGs’ mental health. We interviewed 196 CGs, using a battery of measures including demographic data of the dyads, CRs’ dementia-related impairments, and CGs’ social support, self-efficacy and the Medical Outcome Study (MOS) Short-Form (SF-36) Health Survey. Multiple regression analyses showed that gathering information on self-efficacy and managing CG distress self-efficacy were the partial mediators of the relationship between positive social interaction and CG mental health. Managing caregiving distress self-efficacy also partial mediated the impact of BPSD on CG mental health. We discuss implications of the results for improving mental health of the target population in mainland China.

Cryptanalysis of the LAKE hash family

We analyse the security of the cryptographic hash function LAKE-256 proposed at FSE 2008 by Aumasson, Meier and Phan. By exploiting non-injectivity of some of the building primitives of LAKE, we show three different collision and near-collision attacks on the compression function. The first attack uses differences in the chaining values and the block counter and finds collisions with complexity 233. The second attack utilizes differences in the chaining values and salt and yields collisions with complexity 242. The final attack uses differences only in the chaining values to yield near-collisions with complexity 299. All our attacks are independent of the number of rounds in the compression function. We illustrate the first two attacks by showing examples of collisions and near-collisions.

Symbiotic relationships : saviour siblings, family rights and biomedicine

It is now possible to combine the use of preimplantation genetic diagnosis (PGD) and tissue matching to select an IVF embryo that will, after birth, be a compatible tissue donor for an existing individual. This article analyses the ethical issues and the regulatory frameworks that intersect around the creation of tissue compatible children.

Genetic secrets and the family

The issue of how individual patients and their doctors should act in relation to the knowledge that the patient has a genetic condition— specifically, whether the patient and/or the doctor should or must inform relevant members of the patient’s family���is a looming area of medicolegal controversy. Over the last fifteen years or so, the issue of confidentiality versus disclosure has been particularly controversial in relation to HIV/AIDS patients.1 It has been argued that medical information about genetic disease gives rise to special problems vis-à-vis blood relatives. Because genetic disease is transmitted only by way of procreation, information about genetic disease is unique in that there is a propensity (which is highly variable and depends upon a variety of factors) for the condition to be shared by members of a family who are biologically related. Thus, genetic information about an individual may reveal information about relatives of that individual which is ‘specific (that the person has or will develop a genetic disease); or predictive (that the person has an unspecified risk of developing the disease)’

Physical activity levels among children attending family day care

Objective To objectively measure the physical activity (PA) levels of children attending family day care programs. Methods A total of 114 children from 47 family day care centers wore an accelerometer for the duration of their time in care. Time in moderate-to-vigorous PA (MVPA) and total PA was calculated using previously validated cut points. Results Children accumulated 5.8 ± 3.2 minutes of MVPA and 10.4 ± 4.4 minutes of total PA per hour of attendance. Boys exhibited significantly higher levels of PA than girls. Among healthy weight children, 4- and 5-year-olds exhibited significantly higher levels of PA than 2- and 3-year-olds. Overweight and obese 4- and 5-year-olds exhibited significantly lower levels of PA than their healthy weight counterparts. Conclusions and Implications Children attending family day care participate in low levels of PA during the child care day. The results highlight the need for effective programs to promote PA in family day care.

Validity of family child care providers' proxy reports on children's physical activity

Background Interventions to promote physical activity (PA) in children attending family child care homes (FCCHs) require valid, yet practical, measurement tools. The aim of this study was to assess the validity of two proxy report instruments designed to measure PA in children attending FCCHs. Methods A sample of 37 FCCH providers completed the Burdette parent proxy report, modified for the family child care setting for 107 children 3.4±1.2 years of age. A second sample of 42 FCCH providers completed the Harro parent and teacher proxy report, modified for the family child care setting, for 131 children 3.8±1.3 years of age. Both proxy reports were assessed for validity using accelerometry as a criterion measure. Results Significant positive correlations were observed between provider-reported PA scores from the modified Burdette proxy report and objectively measured total PA (r=0.30; p<0.01) and moderate-to-vigorous PA (MVPA; r=0.34; p<0.01). Across levels of provider-reported PA, both total PA and MVPA increased significantly in a linear dose-response fashion. The modified Harro proxy report was not associated with objectively measured PA. Conclusion Proxy PA reports completed by family child care providers may be a valid assessment option in studies where more burdensome objective measures are not feasible.

Nutrition and physical activity policies and practices in family child care homes

Background Family child care homes (FCCHs) are the second-largest provider of nonrelative care in the U.S. However, despite providing care for nearly 1.9 million children aged <5 years, little is known about the nutrition and physical activity practices of FCCHs. Purpose To address this gap, this study aims to describe policies and practices related to nutrition and physical activity in a representative sample of FCCHs. Methods A stratified random sample of registered FCCHs operating in Kansas (N=297) completed the Nutrition and Physical Activity Self Assessment for Child Care (NAPSACC) instrument. Prevalence estimates and 95% CIs for meeting or exceeding accepted child care standards were calculated using SAS PROC SURVEYFREQ. Results Most providers either met or exceeded child care standards related to serving fruit and vegetables and provision of daily physical activity. Very few providers reported serving fried meats or vegetables or unhealthy snack foods on a regular basis. Areas of concern included infrequent servings of low-fat milk, frequent use of unhealthy foods for celebrations, widespread use of TV and video games throughout the day, restricting physical activity for children who misbehave, and lack of appropriate indoor spaces for physical activity. Only a small percentage of providers reported receiving regular training in nutrition or physical activity. Relatively few providers had written guidelines on nutrition or physical activity. Conclusions Some strengths were exhibited by FCCHs, but substantial weaknesses were shown with respect to meeting established child care standards for nutrition and physical activity. Interventions to promote healthy eating and regular physical activity in FCCHs are thus warranted.

A nutrition and physical activity intervention for family child care homes

Background Family child care homes (FCCHs) provide child care to 1.9 million children in the U.S., but many do not meet established child care standards for healthy eating and physical activity. Purpose To determine the effects of a community-based train-the-trainer intervention on FCCHs policies and practices related to healthy eating and physical activity. Design Quasi-experimental design with replication in three independent cohorts of FCCHs. Setting/participants Registered FCCHs from 15 counties across Kansas participated in the Healthy Kansas Kids (HKK) program. Resource and referral agencies (RRAs) in each county recruited and enrolled between five and 15 child care providers in their service delivery area to participate in the program. The number of registered FCCHs participating in HKK in Years 1 (2006-2007); 2 (2007-2008); and 3 (2008-2009) of the program were 85, 64, and 87, respectively. A stratified random sample of registered FCCHs operating in Kansas (n=297) served as a normative comparison group. Interventions Child care trainers from each RRA completed a series of train-the-trainer workshops related to promotion of healthy eating and physical activity. FCCHs were subsequently guided through a four-step iterative process consisting of (1) self-evaluation; (2) goal setting; (3) developing an action plan; and (4) evaluating progress toward meeting goals. FCCHs also received U. S. Department of Agriculture resources related to healthy eating and physical activity. Main outcome measures Nutrition and Physical Activity Self-Assessment for Child Care (NAP SACC) self-assessment instrument (NAP SACC-SA). Analyses of outcome measures were conducted between 2008 and 2010. Results Healthy Kansas Kids FCCHs exhibited significant improvements in healthy eating (Delta=6.9%-7.1%) and physical activity (Delta=15.4%-19.2%) scores (p<0.05). Within each cohort, pre-intervention scores were not significantly different from the state average, whereas post-intervention scores were significantly higher than the state average. Conclusions Community-based train-the-trainer interventions to promote healthy eating and physical activity in FCCHs are feasible, sustainable, and effective.

Understanding negation and family history to improve clinical information retrieval

We present a study to understand the effect that negated terms (e.g., "no fever") and family history (e.g., "family history of diabetes") have on searching clinical records. Our analysis is aimed at devising the most effective means of handling negation and family history. In doing so, we explicitly represent a clinical record according to its different content types: negated, family history and normal content; the retrieval model weights each of these separately. Empirical evaluation shows that overall the presence of negation harms retrieval effectiveness while family history has little effect. We show negation is best handled by weighting negated content (rather than the common practise of removing or replacing it). However, we also show that many queries benefit from the inclusion of negated content and that negation is optimally handled on a per-query basis. Additional evaluation shows that adaptive handing of negated and family history content can have significant benefits.