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PubMed2000

Commentary: listening to the message.

The first-person accounts of c/s/x experiences with the mental health system have several common threads that run through them. These are: (1) labels are stigmatizing; (2) pathology-based models are destructive: (3) it is important to value individuality; (4) alternative treatments are valuable: (5) peer support and self-help are important; (6) therapist training must be reconsidered; and (7) services should be recovery-oriented. In order to be as helpful as possible, mental health professionals must enter into creative partnerships with those in the c/s/x movement, and must consider incorporating these issues in their own functioning and in the training of future professionals.

Community Participation↗
PubMed2005

The hepatitis C virus alternate reading frame (ARF) and its family of novel products: the alternate reading frame protein/F-protein, the double-frameshift protein, and others.

The hepatitis C virus (HCV) has an alternate reading frame (ARF) that overlaps the core protein gene. The overlapping reading frame distinguishes HCV from all of its known viral relatives, with the possible exception of GB virus B (GBV-B). The ARF is expressed during natural HCV infections and stimulates specific immune responses. Like several essential genes in other viruses (e.g., the human immunodeficiency virus polymerase) the ARF lacks an in-frame AUG start codon, suggesting that its expression involves unusual translation-level events. In vitro studies indicate that ribosomal frameshifting may be one of several processes that can lead to translation of the ARF. Frameshifting yields chimeric proteins that have segments encoded in the core gene covalently attached to amino acids encoded in the ARF. A consistent nomenclature for the ARF's protein products has yet to be established. We propose that all proteins that contain amino acids encoded in the + 1 ARF be called alternate reading frame proteins (ARFPs) and that specific ARFPs, such as the ARFP/F-protein, the double-frameshift protein, and the short form of core + 1, be designated as follows: ARFP/F (ARFP/F-protein), ARFP/DF (double-frameshift), and ARFP/S (short form of core + 1). The roles of ARFPs in the HCV life cycle are not yet known. There is a significant possibility that ARFPs may be responsible for some of the effects attributed to the core protein, given that most studies seeking to define the function of the core protein have employed materials likely to contain a combination of the core protein and ARFPs. The observed effects of the core protein include the induction of liver cancer, transformation of cells, and alterations of immune responses. This article reviews the discovery of ARF, describes the RNA structural elements involved in core/ARF gene expression, discusses possible functions of ARFPs, and considers the potential usefulness of ARFPs in vaccines. The HCV ARF is the focus of a new and rapidly expanding area of research, and the results of many ongoing studies are currently available in abstract form only. The preliminary nature of investigations that have not yet been reviewed by peers is noted in the text.

Animals↗
PubMed2005

African American grandparents raising grandchildren: a national study using the Census 2000 American Community Survey.

OBJECTIVE: The objective of this work was to determine the prevalence, sociodemographic characteristics, and service utilization patterns of African American grandparents raising grandchildren compared with noncaregiving peers. METHODS: Data were obtained from the Census 2000 Supplementary Survey/American Community Survey, a nationally representative survey of 890,000 households. Analysis was based upon comparison of 2,362 African American grandparent caregivers aged 45+ with 40,148 noncaregiving peers. Gender-specific analyses also were conducted. RESULT: Over 500,000 African Americans aged 45+ were estimated to be raising grandchildren in 2000. They were disproportionately female, younger, and less educated than noncaregivers and more likely to be living in poverty and receiving public assistance. Grandmother caregivers had significantly higher rates of functional limitations and poverty than either grandfather caregivers or other African American women aged 45+. DISCUSSION: African American grandparent caregivers, particularly grandmothers, represent a highly vulnerable population economically. The finding that four-fifths of African American grandmother caregivers below the poverty line were not receiving public assistance underscores the need for improving program outreach and substance to better serve this population. The use of theories of intersectionality and multiracial feminism in future studies of grandparent caregiving should enhance our understanding of how the impact of race on gender varies by social class.

Black or African American↗
PubMed2004

Patients' perceptions of treatment with anti-TNF therapy for rheumatoid arthritis: a qualitative study.

OBJECTIVES: Anti-tumour necrosis factor (anti-TNF) therapy is a highly effective treatment for rheumatoid arthritis (RA), as documented using standard outcome measures in clinical trials. Anecdotal experience suggests health benefits for patients other than those measured in this way. We wished to explore Patients' experience of and views about this treatment and the British Society for Rheumatology Biologics Registry (BSR BR) process. METHODS: Separate focus groups for patients treated with infliximab (n = 7) and etanercept (n = 12) were undertaken. They were taped and transcribed verbatim, analysed and subjected to peer review and themes were identified. RESULTS: Five main themes were identified: expectations of treatment, experience of treatment and its effects, concerns about taking a new class of drug, views about the BSR Biologics Registry process and costs. CONCLUSIONS: Patients' experience of anti-TNF therapy was good, particularly in terms of physical function and well-being, although it did not live up to the very high expectations of some patients. The BSR BR process caused initial apprehension but patients had personal and altruistic reasons for being happy to comply with monitoring requirements. Qualitative methods add to our understanding of the effects of anti-TNF therapy for people with RA.

Adult↗
PubMed2007

Nutritional intake and status in children with cystic fibrosis: does age matter?

OBJECTIVES: To determine whether nutritional intake and status vary with age in children with cystic fibrosis (CF). METHODS: Case-control study examining differences in nutritional parameters and intakes in 58 children with CF recruited from a regional centre (2000-2001) and 45 controls. Participants were divided into age groups of 5-8 years, 9-12 years and 13-16 years. Weight, height, body mass index and standard deviation scores were recorded. A 4-day food diary (51 CF, 31 controls) was calculated for macronutrients and micronutrients. RESULTS: Energy intakes (%EAR) increased with age (112%, 115% and 116%, respectively) and were significantly higher in children with CF than controls. Lower weight and growth trends were observed in children ages 5 to 8 years (NS). Weight gain and growth was normal in children with CF ages 9 to 12 years but declined at 13 to 16 years (weight z score -0.85 vs 0.68 P = 0.003, height z score -0.54 vs 0.53 P = 0.002, body mass index z score -0.72 vs 0.41 P = 0.03). Lung function was the most significant predictor of nutritional status at 9 to 12 years (r2 = 0.37, P = 0.006) and 13 to 16 years (r2 = 0.31, P = 0.01), but was not significant in children ages 5 to 8 years. CONCLUSION: Energy intakes increased with age in children with CF and exceeded that of healthy peers in all age groups. Weight gain and growth equaled that of healthy peers at 9 to 12 years but was suboptimal at 5 to 8 years and dramatically declines at 13 to 16 years. Energy intakes were unable to meet the clinical demands of children in these age groups. Both remain vulnerable and require greater nutritional targeting.

Adolescent↗
PubMed2003

Evaluation of support groups for women with breast cancer: importance of the navigator role.

BACKGROUND: At least some forms of breast cancer are increasingly being viewed as a chronic illness, where an emphasis is placed on meeting the various ongoing needs of people living with cancer, their families and other members of their social support networks. This commentary outlines some approaches to the evaluation of cancer-related support groups, with a particular emphasis on those designed to provide long-distance support, via the internet, for women with breast cancer. DISCUSSION: The literature on evaluations of community-based cancer support groups indicates that they offer a number of benefits, and that it is more reasonable to expect an impact of such interventions on psychosocial functioning and/or health-related quality of life than on survival. The literature on both face-to-face and online social support groups suggests that they offer many advantages, although evaluation of the latter delivery mechanism presents some ethical issues that need to be addressed. Many popular online support groups are peer-moderated, rather than professionally-moderated. In an evaluation of online support groups, different models of the role of the "navigator" need to be taken into account. Some conceptual models are outlined for the evaluation of the "navigator role" in meeting the informational, decisional and educational needs of women with breast cancer. The Breast-Cancer Mailing List, an example of an unmoderated internet-based peer-support group, is considered within the context of a Shared or Tacit Model of the navigator role. CONCLUSION: Application of the concept of a "navigator role" to support groups in general, and to unmoderated online ones in particular, has received little or no attention in the research literature. The navigator role should be taken into account in research on this increasingly important aspect of cancer communication.

Breast Neoplasms↗
PubMed1999

Effectiveness of prosthetic rehabilitation of children with limb deficiencies present at birth.

This study was performed to investigate the efficacy of prosthetic rehabilitation in children with congenital malformations, also to determine whether there were any factors related to family history and pregnancy which could have affected the formation of such deficiencies. Twenty-five (25) limb deficient children were provided with prostheses and received rehabilitation. A detailed family and pregnancy history was researched through the records. The ability of performing activities of daily living was scored on a four point scale. Thirteen (13) lower and 12 upper limb deficient children with a mean age of 4.88+/-2.52 years were included in the study. Ten (10) children had longitudinal and 15 transverse deficiencies. Traditional marriages amongst close cousins were observed in 31%. Five (5) mothers used medications, 2 received radiodiagnostic tests and 2 had bleedings during pregnancy. Some 84.7% of the lower limb group became independent walkers without requiring walking aids while 15.3% of them required Canadian crutches for independent ambulation. A total of 61.5% of these children actively participated in recreation with peers. In the upper limb group 41.6% were completely independent in self-care, feeding and hand skills; 33.3% showed independence with self-help devices while 25% tended to use the prostheses for assistive purposes. Participation in recreational activities was 58.2%. The author's results have shown that the children gained a functional activity level although the prostheses were provided in a late period. It can be concluded that success in rehabilitating these children is a true challenge.

Child↗
PubMed2000

Medical ethics surveillance in the Armed Forces.

Modern defense services depend on a policy of the vigorous promotion of research to ensure that they retain an advantage in any future operational context. Research involving personnel within the armed forces, however, has certain constraints with respect to contemporary, best-practice medical ethics. Service members are one example of a class of "captive subjects" who require special protection in the context of medical research. (Prisoners, students, children, and the intellectually disabled are other such examples.) The majority of national defense forces now have ethical watchdog groups--institutional ethics committees--that oversee research involving service members. Such groups monitor the special considerations and constraints under which subjects in uniform can volunteer for biological research. These committees audit particularly the ethical themes of confidentiality, equality, and justice. Themes inherent in medical research in the military include the standard Beauchamp-Childress paradigm of autonomy, beneficence, nonmaleficence, and justice, to which are added the traditional military values of loyalty, respect, courtesy, and chivalry. Contemporary thinking is that the general principle of affording service members the opportunity to volunteer for research should be maintained within the constraints of compromised training time, national security, and operational necessity. Most biological research (and its outcome) does not in practice compromise confidentiality or military security. This paper presents an audit of the functioning of one national military medical ethics committee, the Australian Defence Medical Ethics Committee, and presents a discussion of its philosophies and influence within the broader military context. The Australian Defence Medical Ethics Committee believes that most research should, as an a priori condition of approval, be intended for open publication in peer-reviewed journals.

Australia↗
PubMed2006

Systematic review of the qualitative literature on return to work after injury.

OBJECTIVES: This paper reports on a systematic review of the international qualitative research literature on return to work. This review was undertaken in order to better understand the dimensions, processes, and practices of return to work. Because return to work often includes early return before full recovery while a person is undergoing rehabilitation treatment, physical recovery is embedded in complicated ways with workplace processes and practices and social organization. These process-oriented dimensions of return to work are well described in the qualitative literature. METHODS: This systematic review of the literature covered peer-reviewed papers that focused on musculoskeletal and pain-related injuries and were published in English or French between 1990 and 2003. Findings from papers meeting relevance and quality criteria were synthesized using the meta-ethnographic approach. RESULTS: This review found that return to work extends beyond concerns about managing physical function to the complexities related to beliefs, roles, and perceptions of many players. Good will and trust are overarching conditions that are central to successful return-to-work arrangements. In addition, there are often social and communication barriers to return to work, and intermediary players have the potential to play a key role in facilitating this process. CONCLUSIONS: This paper identifies key mechanisms of workplace practice, process, and environment that can affect the success of return to work. The findings illustrate the contribution that qualitative literature can make to important aspects of implementation in relation to return to work.

Accidents, Occupational↗
PubMed1977

[The problem of juvenile alcoholism. An analysis of the literature (author's transl)].

In contrast to drug addiction juvenile alcoholism now also common in West Germany, has hardly been investigated. This is meant to be an analysis of the literature, based mainly paper on German and American writings which the author tries to link to his own experience. The older papers from around the turn of the century are particularly evaluated. Essentially the following may be said: Transition between the use, misuse and dependence on alcohol is fluid, particularly in juvenile alcoholism. In our type of Society drinking in adolescence is part of an anticipatory socialization process and so a normal transitional phenomenon. More attention has lately been paid to influences arising in the primary group (family and peers). Girls tent to accept the traditions of the family more readily and follow in alcohol consumption more their mothers than their fathers. The epidemiologic papers published in German on drug addiction of juveniles can hardly be compared with each other, even if they take account of alcohol consumption. Individual control investigations on comparable populations during the last few years show an increase of excessive alcohol intake particularly among the young. In West Germany there are no reliable statistics on alcoholism in adults, even less in juveniles. The methodic difficulties in assessing prevalence of juvenile alcoholism are specific, but they mirror the general difficulties of definition in research into alcoholism. Clinical experience suggests that alcoholism runs a different course in juveniles--and in women--from that seen in adult men. Literature on juvenile alcoholism is sparse compared with that on drug addiction. The question of a correlation between primary alcoholism and drug-addiction - the role of alcohol as initiator to drugs - cannot be defined in general, only in individual terms. In drug addicts alcohol had and has the function of an addition to/or replecement for drugs. The alcohol problem started under the cover of drug addiction but without the preceding wave of drugs it would not have reached the present level...

Adolescent↗
PubMed1988

School-based tobacco use prevention.

Although school-based tobacco use prevention programs have had limited short-term success, questions remain about whether these programs would have the same degree of success with youths at risk for habitual tobacco use. This article describes a pilot project to discriminate these high-risk youths from low-risk youths. Two hundred twenty-five consenting youths from a western state completed a questionnaire containing individual, demographic, and environmental correlates of habitual tobacco use. The total sample consisted of 105 males and 119 females. Nineteen percent came from ethnic minorities, and 69% were from traditional households. Discriminant function analyses identified correlates that discriminated between current tobacco users and nonusers as well as students intending to use tobacco from those who did not.

Child↗
PubMed1993

A quality-of-care analysis of cascade iatrogenesis in frail elderly hospital patients.

Cascade iatrogenesis is defined as a related sequence of adverse events that are triggered by an initial medical intervention. In an attempt to determine whether such a phenomenon is be associated with the quality of care provided, physician reviewers identified iatrogenic cascades and the rated quality of care given to a sample of long-stay teaching hospital patients. The care was rated with a structured implicit review instrument. Cascade iatrogenesis was found to occur most frequently among the oldest patients, the most functionally impaired, and those with a high severity of illness on admission. Closer examination of these findings suggests that there is significant potential for improving physicians' initial functional and diagnostic assessment skills when treating frail elderly patients.

Aged↗
PubMed2000

Interventions that facilitate socialization in children with autism.

Social dysfunction is perhaps the most defining and handicapping feature of autism. Improved social functioning has long been considered one of the most important intervention outcomes. A variety of social interventions have been designed, empirically examined, and published in the autism literature. Children with autism have been found to be responsive to a wide variety of interventions aimed at increasing their social engagement with others, both adults and peers. Successful strategies employing peer-mediated approaches and peer tutoring have involved typically developing peers. Furthermore, several studies have demonstrated that social engagement directly affects other important behaviors like language, even when these behaviors are not specifically targeted by the teaching program. Thus, while an area of severe involvement, social behavior is also responsive to intervention.

Autistic Disorder↗
PubMed1996

Estimating individual influences of behavioral intentions: an application of random-effects modeling to the theory of reasoned action.

Methods are proposed and described for estimating the degree to which relations among variables vary at the individual level. As an example of the methods, M. Fishbein and I. Ajzen's (1975; I. Ajzen & M. Fishbein, 1980) theory of reasoned action is examined, which posits first that an individual's behavioral intentions are a function of 2 components: the individual's attitudes toward the behavior and the subjective norms as perceived by the individual. A second component of their theory is that individuals may weight these 2 components differently in assessing their behavioral intentions. This article illustrates the use of empirical Bayes methods based on a random-effects regression model to estimate these individual influences, estimating an individual's weighting of both of these components (attitudes toward the behavior and subjective norms) in relation to their behavioral intentions. This method can be used when an individual's behavioral intentions, subjective norms, and attitudes toward the behavior are all repeatedly measured. In this case, the empirical Bayes estimates are derived as a function of the data from the individual, strengthened by the overall sample data.

Adolescent↗
PubMed1986

Narrative discourse: spontaneously generated stories of learning-disabled and normally achieving students.

Spontaneously generated oral stories were obtained from 93 learning-disabled (LD) and normally achieving (NA) students, 14 to 16 each at 8:0-9:11, 10:0-11:11, and 12:0-13:11 age levels. The stories were analyzed using an adapted version of Stein and Glenn's (1979) story grammar. The results showed significant group and age differences. The stories told by the LD subjects contained fewer propositions and complete episodes and contained significantly fewer Minor Setting statements than those of their NA peers. Within an episode, the LD subjects were less likely to include Response, Attempt, and Plan statements than the NA counterparts. Group differences were also found in the area of interepisode relations. The major age-related findings were an increased occurrence of complete episodes and a greater frequency of embedded episodes as a function of increasing age. Findings are discussed with regard to the development of oral narration abilities. Explanations are offered to account for the storytelling deficits exhibited by the LD subjects.

Adolescent↗
PubMed1989

Youngsters with moderate or severe mental retardation and severe spoken language impairments. I: Extant communicative patterns.

This study characterizes the communicative patterns of youngsters with moderate or severe mental retardation and severe spoken language impairments who are not independent speakers with conversational partners at home and at school. Nine subjects were observed during six 1-hr mealtime sampling periods in both settings for a total of 12 hr. Live continuous observations were made, employing a coding scheme designed to record occurrences of the subjects' communicative behaviors. Findings are discussed with respect to the modes and functions of the youngsters' communications with home and school conversational partners.

Adolescent↗
PubMed2005

Systematic review of surgical options for idiopathic megarectum and megacolon.

OBJECTIVE: A subgroup of patients with intractable constipation has persistent dilatation of the bowel, which in the absence of an organic cause is termed idiopathic megabowel (IMB). The aim of this systematic review was to evaluate the published outcome data of surgical procedures for IMB in adults. METHODS: Electronic searches of the MEDLINE (PubMed) database, Cochrane Library, EMBase, and Science Citation Index were performed. Only peer-reviewed articles of surgery for IMB published in the English language were evaluated. Studies of all surgical procedures were included, providing they were performed on 3 or more patients, and overall success rates were documented. Studies were critically appraised in terms of design and methodology, inclusion criteria, success, mortality and morbidity rates, and functional outcomes. RESULTS: A total of 27 suitable studies were identified, all evidence was low quality obtained from case series, and there were no comparative studies. The studies involved small numbers of patients (median 12, range 3-50), without long-term follow-up (median 3 years, range 0.5-7). Inclusion of subjects, methods of data acquisition, and reporting of outcomes were extremely variable. Subtotal colectomy was successful in 71.1% (0%-100%) but was associated with significant morbidity related to bowel obstruction (14.5%, range 0%-29%). Segmental resection was successful in 48.4% (12.5%-100%), and recurrent symptoms were common (23.8%). Rectal procedures achieved a successful outcome in 71% to 87% of patients. Proctectomy, the Duhamel, and pull-through procedures were associated with significant mortality (3%-25%) and morbidity (6%-29%). Vertical reduction rectoplasty (VRR) offered promising short-term success (83%). Pelvic-floor procedures were associated with poor outcomes. A stoma provided a safe alternative but was only effective in 65% of cases. CONCLUSIONS: Outcome data of surgery for IMB must be interpreted with extreme caution due to limitations of included studies. Recommendations based on firm evidence cannot be given, although colectomy appears to be the optimum procedure in patients with a nondilated rectum, restorative proctocolectomy the most suitable in those with dilatation of the colon and rectum, and VRR in those patients with dilatation confined to the rectum. Appropriately designed studies are required to make valid comparisons of the different procedures available.

Adolescent↗
PubMed1987

Correlates of social and academic competence in middle childhood.

The correlates of social and academic competence were investigated in 9-14 yr old children. Factor analysis of multiple measures of cognitive functioning, excluding IQ identified three dimensions: (1) Social Comprehension; (2) Cognitive Efficiency and (3) Divergent Thinking. The social comprehension dimension was derived from measures of humor and social cognition. Although strongly related to IQ, Social Comprehension still had a substantial unique relation to social competence in a school setting, as assessed by teachers and peers. While this dimension was the best predictor of social competence, IQ was by far the most powerful predictor of academic competence.

Adolescent↗