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Chronic illness: trauma, language, and writing: breaking the silence.

In our work with families that struggle with a chronic illness, we have relied on three ideas. First, we regard illness as a relationally traumatizing experience, not just for the person with the illness, but for other members of the family as well. We use the phrase "relational trauma" because of its effects on members of a wider system who also show signs of physical stress, isolation, and helplessness (Sheinberg & Fraenkel, 2000). Our second concern is how the conversation that leads to new stories is expanded through the development of voice and the use of writing. Looking at language, we are particularly attentive to the social prevalence of negative metaphors that surround and engulf the ill person and her family: dependence, poor genes, repressed personalities, weak constitutions, et cetera (Sontag, 1984). These negative metaphors, or outside voices, join with the inner voices of the ill person and result in a silence that disconnects people at a time when connections must be relied on and above question. Our third emphasis is on the use of writing as the means to create new voices, metaphors, and multiple descriptions that can reinvigorate the conversations silenced by the illness. Once the family's voices are reconstituted through writing, the emotions that have been displaced by the illness are restored to their conversation. I have included new research from JAMA detailing the treatment of patients with chronic illness through their use of writing.

Chronic Disease↗

Temporary agency contracts: what should they include?

The AHRA Board committed to provide some tools to help our members with agency contracts. This article provides the sections for a contract and what they should include. Of course, the language will have to comply with your organization's requirements. To comply with HIPAA regulations for contracts, I've also included language for business associates. JCAHO requires that the following documentation be on file for all contracted personnel: 1. Hospital job description or formal contract outlining the job responsibilities. 2. All licenses, certifications and registrations are reviewed and a process is developed to ensure that they remain current. 3. Competency is evaluated and maintained. 4. Evidence that personnel received a general orientation. 5. Evidence that personnel received a departmental orientation. 6. Safety and infection control standards must be met. In order to aid with compliance when utilizing contracted personnel, my organization developed a Contractor Personnel Administrative Compliance Checklist, which identifies requirements for compliance, a reference for assistance, and places to record that the requirement has been met for each of the areas listed in the previous item. Our standard contract includes sections on general definition of engagement, credentials and work experience; health, including immunization and drug testing; corporation; JCAHO; terms of the contract; and, non-disclosure of information. A business associate agreement may be necessary to comply with HIPAA regulations. Using the template has made my job much easier than trying to read each contract that crosses my desk. If an agency refuses to sign our contract, then we do not conduct business with that company. If an agency requests changes to the contract, depending on the language, we may or may not agree to it. This information is not intended to be legal advice, but rather an educational overview. As with any contract, the reader should consult with legal counsel at his or her organization.

Contract Services↗

Multidisciplinary baseline assessment of homosexual men with and without human immunodeficiency virus infection. III. Neurologic and neuropsychological findings.

We explored the possibility that neurologic and neuropsychological changes constitute the earliest detectable manifestations of human immunodeficiency virus (HIV) infection. Without knowledge of HIV status, we assessed neurologic signs and symptoms and administered a battery of neuropsychological tests to 208 homosexual men, of whom 84 were HIV negative, 49 were HIV positive and asymptomatic, 29 were mildly symptomatic, and 46 had significant medical symptoms but not the acquired immunodeficiency syndrome. There was no difference between the HIV-negative and HIV-positive men in the frequency of neurologic signs or of defective or borderline performance on any neuropsychological test. However, HIV-positive men performed slightly but significantly worse than HIV-negative men on tests of verbal memory, executive function, and language. Similar results were obtained when comparisons were limited to HIV-positive medically asymptomatic and HIV-negative men. There was no degradation of neurologic status or neuropsychological performance across stages of HIV severity, but neurologic and neuropsychological summary scores correlated with CD4/CD8 ratios in the HIV-positive group. Ratings of neurologic signs and symptoms correlated with neuropsychological summary scores in the HIV-positive group only. Cognitive complaints were more frequent in the HIV-positive men; they correlated with actual test performance in the HIV-positive but not HIV-negative men. The constellation of subjective and objective neuropsychological and neurologic findings suggests the possibility of a definable syndrome associated with HIV infection in asymptomatic individuals.

Adolescent↗

Evaluation of predictors of mortality in frontotemporal dementia-methodological aspects.

OBJECTIVES: To retrospectively evaluate pre-diagnostic clinical features (predictors) of mortality in frontotemporal dementia (FTD). The main aim was to investigate if there were indications against interpreting missing data as signs of absence. MATERIAL AND METHODS: 96 cases with FTD, here defined as Dementia in Pick's disease according to ICD-10. The predictors were behavioural/psychiatric features, language impairment and neurological deficits up to the date of diagnosis. Each predictor was rated as present (Yes), absent (No) or not recorded (Missing), and evaluated according to its distribution and mortality pattern: if a feature was not recorded because it was absent, the mortality of the Missing and the No-category should hypothetically be close. Statistical methods included Kaplan-Meier survival curves and Cox regression analyses. RESULTS: Neurological deficits and language impairments were frequently recorded as present or absent, while non-recordings were more prevalent among the behavioural/psychiatric features. Some features were excluded as predictors because they showed too little variation. Analyses of the survival pattern indicated that in some features, the observations of the Missing-category could be interpreted as absence of the symptoms. In other features these observations had to be regarded as truly missing. CONCLUSIONS: In the retrospective evaluation of predictors of mortality a method for treating missing data was applied. The interpretation of non-recordings as signs of absence was supported by the analyses of the survival patterns in some of the studied features. However, the study underscores the importance of systematic estimations of pre-diagnostic clinical features in dementia.

Aged↗

Multiple cutaneous metastases from male breast carcinoma.

Skin involvement as a symptom, or even the presenting sign, of this breast cancer in men is not well known by dermatologists. In fact, a review of the English-language literature reveals few references about this subject. We report a case of breast carcinoma in a 58-year-old man with rapidly progressive cutaneous metastases that did not respond to any treatment schedules.

Antineoplastic Combined Chemotherapy Protocols↗

Parotid gland metastasis from renal cell carcinoma.

OBJECTIVE: To discuss the diagnosis and management of metastatic renal cell carcinoma presenting as a parotid mass by studying such cases. STUDY DESIGN: Retrospective review. METHODS: Identification of 24 previously reported cases of renal cell carcinoma metastatic to the parotid gland in the English language literature and an analysis of a total of 25 patients including our case. RESULTS: Parotid metastasis was the initial presenting sign of the malignancy in the kidney in 14 of 25 (56%) cases; 11 of 25 (44%) cases presented with metachronous metastasis to the parotid. The most common presenting complaint was parotid mass. No case presented with facial paralysis. In three of six (50%) patients, fine-needle aspiration biopsy was diagnostic. CONCLUSIONS: In the majority of cases, parotid metastases are the first clinical sign of the renal cell carcinoma. Fine-needle aspiration biopsy can provide crucial information without parotidectomy as in our case. Parotidectomy with facial nerve preservation should be considered as a therapeutic option for solitary parotid metastasis.

Aged↗

Diagnosis of laryngopharyngeal reflux.

PURPOSE OF REVIEW: Laryngopharyngeal reflux is of great interest to otolaryngologists, speech and language therapists, and gastroenterologists. This is a brief review of recent publications in the diagnosis of laryngopharyngeal reflux. RECENT FINDINGS: Otolaryngologic signs and symptoms can be found in 4 to 10% of patients with gastroesophageal reflux and those presenting for ear, nose, and throat evaluations. Laryngeal signs are not pathognomonic for laryngopharyngeal reflux because many of these signs can be found in healthy volunteers. A combination of signs and symptoms should be sought before suspecting this diagnosis. Most investigators consider pH monitoring the best currently available instrument to diagnose gastroesophageal reflux, even though it is not considered to be 100% sensitive and specific. Studies in normal volunteers indicate that a minimal number of reflux episodes reach the hypopharynx. The correlation between laryngeal signs and symptoms and pH-documented reflux is less than perfect, whereas the combination of pH testing and signs and symptoms is better in detecting patients with a favorable response to acid-suppressing therapy. Using an empiric trial of high-dose proton pump inhibitors over a prolonged period of time to diagnose laryngopharyngeal reflux is supported mainly by uncontrolled studies. To date, double-blind, placebo-controlled studies suggest that empiric trials of proton pump inhibitors may not have high accuracy for the diagnosis of laryngopharyngeal reflux. SUMMARY: Multidisciplinary trials are needed to establish the optimal combination of sign and symptom scores, reflux monitoring results, and empiric treatment trials for the most accurate diagnosis of laryngopharyngeal reflux.

Antacids↗

Folklore associated with dying in the west of Ireland.

The warm welcome for modern advances in the care of the dying should not exclude the past in which there is much to be learned from the skills of our ancestors. A bilingual two-year qualitative research project into traditions associated with dying and death was undertaken. Research began in the archives available in the internationally recognized university folklore departments of Ireland and Scotland. This was augmented by 40 indepth personal interviews with Gaelic- and English-speaking residents in rural communities of both countries, recalling local customs and practices in the care of the dying. This paper reports the Irish experience; the collection of data in Scotland continues. From this study, several main themes emerged. Death was seen and accepted as a natural continuation of life, simply a step into the spirit world. In view of people's oneness with nature and the spiritual world, death was not to be feared. Traditions were unique to each area even down to the precise number of candles used at the sickbed. People understood the signs and symptoms of dying and were skilled in alleviating the distress of both relatives and the dying; and, in this, language was important in capturing and expressing the philosophy of these people. The acceptance of death as the one truism of life was facilitated by the strong faith and prayer of people for whom, in the celebration of death, humour was never far away. In their grief, the community was supported by the loose formality of the wake (torramh), funeral procession, keening (caoineadh) and music. In all these, the men and women of the community and its leaders had distinct and respected roles to play.

Attitude to Death↗

Managing cancer: the role of holiday taking.

BACKGROUND: The primary objective of this paper is to consider whether holiday taking may have a role to play post-diagnosis/treatment, within the rehabilitation process for cancer patients. METHOD: A qualitative study was undertaken. Informants consisted of cancer patients (n=24), their family members (n=13) and friends (n=2), consultants (n=2) pediatric oncology nurses (n=2), social workers (n=2), a voluntary services coordinator (n=1), and a play specialist (n=1). All were accessed through four facilitators at Christie Hospital, National Health Service Trust, Manchester, United Kingdom. Data were collected via interviews, telephone discussions, letters, personal accounts, and health diaries between January 2000 and March 2001. Questions were asked regarding the perceived effects of travel during serious illness, travel propensity, and factors inhibiting full participation. RESULTS: Benefits to health and well being, particularly of a sociopsychological nature, were identified. Such benefits impacted upon personal health, social effectiveness, personal identity, self-image, independence, future career prospects, and personal behavior. Factors inhibiting travel included the side effects of treatment, other peoples' reactions to the visible signs of cancer (e.g., hair loss, surgical scars), inflated insurance costs, a lack of holiday information sources, and communication issues (e.g., language barriers). CONCLUSIONS: Holiday taking offers a vehicle for transcending illness, even if only for a short period of time. Travel offered a range of therapeutic opportunities as well as providing a necessary means of escapism. Promoting travel as part of the rehabilitation process may well generate more intrinsic benefits than are currently appreciated. Such benefits may also be of broader application to patients facing other similarly complex illnesses.

Adaptation, Psychological↗

Research in infantile autism: a strategy and its results.

Three major causation theories of infantile autism were tested during 12 years of research: (i) "nurture," (ii) "nature," and (iii) "nature-nurture" interaction. Data from major studies are presented showing strong support for the nature causation theory. Aut parents, in comparison to two control groups (normal and nonpsychotic abnormal), were appropriately stimulating and warmly relating to their Aut infants. Aut parents had no greater amounts of psychopathology than control parents. Aut children had: (i) more signs of neurobiological pathology than normal children; (ii) a high preponderance (94%) of IQ's in mentally retarded ranges; (iii) central language disorders which precluded development of normal verbal abstraction ability and creative speech; (iv) visual-motor disorders akin to a dyspraxis interfering with normal acquisition of "body language". With a greatly reduced capacity for acquiring both verbal and nonverbal communication skills, the ability of Aut Children to use other humans as helpful interpreters of the environment was also seriously curtailed. Not finding other humans useful in such interpretation, the phenomenon of social withdrawal was the logical end product in Aut Child.

Autistic Disorder↗

[From the clinical to the genetic diagnosis of Prader-Willi and Angelman syndromes].

INTRODUCTION AND DEVELOPMENT: Angelman syndrome (AS) is characterised by severe mental retardation (MR), the absence of language, ataxia and/or tremors in the extremities and a characteristic behavioural phenotype with a happy behaviour and hyperactivity. Patients often show signs of microcephaly and convulsions. Prader-Willi syndrome (PWS) is characterised by acute hypotonia and feeding problems in the neonatal period, and triggers an uncontrollable appetite in the infant that leads to obesity. Most patients have some degree of MR, behavioural disorders and hypogonadism. Both pathologies are caused by a number of genetic mechanisms that affect the 15q11-q13 region regulated by genomic imprinting, which means that only one of the two copies of the genes in this region will be functional, depending on which parent they come from. The physical or functional absence of genes that are only expressed by the mother's chromosome 15 causes PWS and gentic anomalies which affects the UBE3A gen mother's copy causes AS. CONCLUSIONS: It is important to confirm the clinical diagnosis and to establish the genetic mechanism responsible for the two syndromes, both for their consequences as regards the prognosis and for genetic counselling; it is therefore important to draw up a diagnostic algorithm.

Algorithms↗

[Clinical and videofluoroscopic evaluation of swallowing in patients with spastic tetraparetic cerebral palsy and athetosic cerebral palsy].

AIM: To evaluate and to compare the findings of oral and pharyngeal phases of swallowing in children with both spastic tetraparetic cerebral palsy (STCP) and with athetosic cerebral palsy (ACP). PATIENTS AND METHODS: 11 children were evaluated, with their ages ranging from 10 months to 8 years old, through both clinical assessment and videofluoroscopic evaluation. RESULTS: The children with STCP were more involved at the neurologic, clinical and speech-language and hearing aspects. At the oral phases all the children had presented some involvement. At the pharyngeal phases the clinical signs of aspiration were identified in 10 children. It was observed aspirations in 80% of children with STCP and in 67% with ACP. The changes on swallowing were similar in both cerebral palsy groups, but the performance of the children with STCP was inferior. CONCLUSION: The videofluoroscopy was an important method which makes possible the verification of aspirations, helping the professionals at the therapeutical program for these children.

Cerebral Palsy↗

Metachromatic leucodystrophy in children.

Nine children with a proven enzymological diagnosis of metachromatic leucodystrophy are described. All except one have shown a progressive course with the clinical features of peripheral neuropathy, corticospinal tract involvement and dementia. Seizures and cerebellar signs also may occur. Abnormalities in nerve conduction, CSF, sural nerve biopsy and CT scan are described. One patient presented with language regression but after 5 years still had not developed other features of MLD.

Biopsy↗

The congenital bilateral perisylvian syndrome: imaging findings in a multicenter study. CBPS Study Group.

PURPOSE: To describe the neuroimaging findings and the clinical features in patients with the congenital bilateral perisylvian syndrome. PATIENTS AND METHODS: Evaluation including history, general and neurologic examinations, electroencephalogram, chromosomal studies, and imaging data were reviewed in 31 patients. Pathologic material was available in two patients. RESULTS: All patients had similar neurologic dysfunction, primarily pseudobulbar paresis. Dysarthria and severe restriction of tongue movements were present in all. Motor milestones were delayed in 75% of the patients and language milestones in all. Mild to moderate intellectual deficits were documented in 75% of patients (full-scale IQ = 70). Pyramidal signs were observed in 70%. Seizures were present in 87% and were intractable to medical therapy in half of this group. MR revealed bilateral perisylvian and perirolandic malformations with exposure of the insula. The malformations were symmetrical in 80% of cases. Pathologic correlation revealed four layered polymicrogyria in the affected areas. CONCLUSIONS: The congenital bilateral perisylvian syndrome is a homogeneous clinical-radiologic entity. The underlying abnormality is probably polymicrogyria.

Adolescent↗

Otitis media with effusion.

Otitis media with effusion is common in young children and varies widely in duration and severity. Defined as fluid in the middle ear without signs or symptoms of infection, it is generally asymptomatic. However, it has the potential to adversely affect hearing, speech development, and language acquisition.

Anti-Bacterial Agents↗

Relationship between craniomandibular dysfunction and pattern of speech sound production in a series of first-graders.

This report investigates associations between prevalence of functional disturbances of the masticatory system and speech disorders. The subjects were 157 children referred for speech therapy to the hospital and a control group all 130 first-graders at two elementary schools, mean age 7 years 6 months. During clinical examinations, signs and symptoms of TMJ dysfunction were recorded by the same dentist. Articulatory speech disorders were diagnosed by the same phoniatrician using the Remes Articulatory Test (Remes, 1975) for the Finnish language. The results showed that in the hospital referral group the mean value for maximal opening was smaller while laterotrusion movements and maximal protrusion of the mandible were larger than in the control group. The study group also more often had CM disorders and occlusal interferences than children of the first grade sample. In the present data, a higher frequency of subjective symptoms and several clinical signs of CMD were related to certain articulatory speech disorders. Risk of having too anteriorly-produced sounds, mainly 's'-sounds, decreased with advancing age in 6-8-year-old children. In conclusion, expression of both craniomandibular disorder and disorders in speech sound production seem to a considerable extent to reflect immaturity of fine motor control of the orofacial muscles in 6-8-year-old children.

Articulation Disorders↗

Follow-up of children with autism spectrum disorders from age 2 to age 9.

The purpose of the present study was to examine the developmental outcomes of children 7 years after their initial diagnosis. Children diagnosed with autism or PDD-NOS at age 2 received follow-up evaluations at age 9. Diagnostic stability was high, with 88 percent of the sample obtaining autism spectrum diagnoses at age 9. Cognitive scores improved considerably for a large segment of the sample, with over 50 percent obtaining scores in the average range at follow-up. Language outcomes were also positive at follow-up; 88 percent of the sample demonstrated at least some functional language, and 32 percent were able to engage in conversational exchanges. Early characteristics that predicted outcome status were: age of diagnosis, age 2 cognitive and language scores, and total hours of speech-language therapy between ages 2 and 3. These findings highlight the potential long-term benefits of both early identification and early intervention, and provide additional evidence for the importance of promoting public awareness of the early signs of autism.

Autistic Disorder↗

Disorders of classificatory activity in aphasia.

Two nonverbal tasks of classificatory activity ("class inclusion" and "class intersection") were administered to 46 aphasics, 28 normal controls, 19 nonaphasic left-brain-damaged and 17 right-hemisphere-damaged patients in order to study if aphasic patients are more impaired than nonaphasic brain-damaged patients on these two tasks of elementary logic and if a relationship exists within the aphasic patients between inability to perform the tasks of classifiactory activity and impairment of the semantic-lexical level of integration of language. Results were for the most part in line with expectations because aphasics scored worse than normal controls and nonaphasic brain-damaged patients (even if the difference reached the level of statistical significance only on the test of "class intersection") and within the aphasic patients the worst results were obtained by subjects presenting clear signs of semantic-lexical disintegration.

Aphasia↗