Behaviour problems, maternal internalising symptoms and family relations in families of adolescents and adults with fragile X syndrome.

BACKGROUND: Studies have linked the behaviour problems of children with fragile X syndrome (FXS) to maternal well-being, but less is known about how behaviour problems relate to important family factors such as marital satisfaction and family cohesion. METHODS: Married mothers of 115 adolescents and adults with FXS completed questionnaires and interviews, and maternal CGG repeat length was obtained by medical/laboratory records or by blood analysis. RESULTS: Indirect effects were present between behaviour problems and family variables in that behaviour problems were positively related to maternal internalising symptoms which were, in turn, negatively associated with both family cohesion and marital satisfaction. Direct associations between behaviour problems and family relationship variables were not significant. CONCLUSIONS: Findings suggest the importance of intervening with behaviour problems in individuals with FXS and identify maternal mental health as a potentially powerful conduit for the effects of child behaviour on relationships within these families. Implications for targeted interventions are discussed.

Factors predicting mortality in midlife adults with and without Down syndrome living with family.

BACKGROUND: Little is known about the mortality of individuals with Down syndrome who have lived at home with their families throughout their lives. The current study evaluates the predictors, causes and patterns of mortality among co-residing individuals in midlife with Down syndrome as compared with co-residing individuals with ID owing to other causes. METHOD: This paper examines mortality in 169 individuals with and 292 individuals without Down syndrome from 1988 to 2007. Dates and causes of death were obtained from maternal report, the Social Security Death Index and the National Death Index. Risk factors predicting mortality, including demographic variables, transition variables, and initial and change measures of health, functional abilities and behaviour problems, were obtained from maternal report. RESULTS: Having Down syndrome is a risk factor of mortality, net of other risk factors including older age, poorer functional abilities, worsening behaviour problems, residential relocation and parental death. The causes of death among individuals with and without Down syndrome who are in midlife and co-residing with their families are similar, and are most commonly due to cardiovascular or respiratory problems. CONCLUSIONS: The findings indicate that midlife adults with Down syndrome who co-reside with their families generally exhibit similar causes of mortality as do midlife adults with intellectual disability owing to other causes, but show an elevated risk of mortality in midlife net of other variables, such as age and changes in functional abilities and behaviour problems.

Siblings of individuals with autism or Down syndrome: effects on adult lives.

BACKGROUND: In this study, we examine instrumental and affective involvement in the sibling relationship for adults who have a brother or sister with an autism spectrum disorder (ASD) or Down syndrome (DS). We ask three research questions: (1) How do adult siblings of individuals with ASD differ from siblings of individuals with DS in their assessment of the quality of the sibling relationship and their experience of growing up with a brother or sister with a disability? (2) Are there gender effects on the sibling relationship and sibling experience in these two groups? (3) Which factors are predictive of variation in the sibling relationship for siblings of adults with ASD or DS? METHODS: Data from 154 siblings who participated in two linked longitudinal studies were used. Seventy-seven siblings with a brother or sister with ASD were matched by age and gender to 77 siblings with a brother or sister with DS. The siblings in each group were between 21 and 56 years of age and over half were sisters. Siblings completed questionnaires on instrumental and affective involvement with their brother or sister with ASD or DS, the impact of growing up with a brother or sister with a disability on their lives, and their coping skills and feelings of pessimism. RESULTS: Compared with the siblings of adults with DS, siblings of adults with ASD had less contact with their brother or sister, reported lower levels of positive affect in the relationship, felt more pessimistic about their brother or sister's future, and were more likely to report that their relationships with their parents had been affected. For siblings of adults with ASD, a closer sibling relationship was observed when the sibling had lower educational levels, lived closer to the brother or sister with ASD, used more problem-focused coping strategies, and when his or her brother or sister with ASD had higher levels of functional independence. In contrast, for siblings of adults with DS, a closer sibling relationship was observed when the sibling did not have children, had lower levels of education, lived closer to the brother or sister with DS, when he or she used more problem-focused coping, was less pessimistic about the brother or sister's future, and when his or her life had been impacted to a greater extent by growing up with a brother or sister with DS. CONCLUSIONS: We discuss the implications of these findings for future caregiving roles for siblings. Siblings of individuals with ASD may face difficulty when their parents are no longer able to be the primary caregivers for their brother or sister with ASD, as they tend to have less emotional closeness and are more pessimistic about their brother or sister's future than siblings of individuals with DS. Moreover, in both groups, a closer sibling relationship was observed when the sibling used more problem-focused coping strategies, which may have implications for intervention.

Curcuminoid ligands for sensitization of near-infrared lanthanide emission.

Fluorescent lanthanide complexes were synthesized using a non-phenolic analog of curcumin as the principal chromophoric chelating ligand. Sensitized, near-infrared fluorescence is observed in these complexes as a result of photo-excitation of the chromophoric ligands, population of the molecular triplet state, and transfer of energy to the emitting lanthanide ion. For the purpose of intra-molecular energy transfer, the triplet states of curcuminoid ligands are more favorably matched with the excited electronic states of neodymium and ytterbium ions than those associated with less conjugated beta-diketonate ligands. Sensitization of fluorescence through an internal redox reaction, thought to occur in other ytterbium complexes, is predicted to be less probable under the present circumstances.

Adults with autism living at home or in non-family settings: positive and negative aspects of residential status.

BACKGROUND: Very little is known about the context of caregiving by parents of adults with autism or about the perceived impacts of continued patterns of co-residence vs. out-of-family living. In the present study, maternal assessments of residential status, involvement with adult children living in a non-family setting, and the impacts on mothers of their residential arrangements were examined. METHODS: Mothers from 133 families of adults (aged 22 years and older) with autism spectrum disorder (ASD) completed questionnaires as part of a longitudinal study on family caregiving. Mothers completed open-ended questions regarding the positive and negative aspects of their child's residential arrangement. Mothers also completed scaled questions regarding their satisfaction with their child's residential arrangement, the different ways in which people's lives change after a relative moves from the home, and the frequency of contact with their son or daughter. RESULTS: Mothers found co-residing with their adult child to be of greatest positive benefit to the family while those living apart found this residential arrangement of greatest benefit to the son or daughter with ASD. The greatest negative consequences for co-residing mothers were understood to fall on families, while mothers felt the majority of negative consequences for those that lived apart. There was a high level of contact and maternal involvement between the mother and adult child with ASD even after out-of-home placement. CONCLUSIONS: Residential status, as appraised by mothers, has varying impacts on the individual with ASD, on the family, and on mothers as individuals and caregivers. The present analysis suggests the multifaceted and highly contingent maternal experience associated with where her child with ASD lives. Among families whose children live elsewhere, there is an impressive amount of continued contact between these families and their son/daughter.

The role of coping in maintaining the psychological well-being of mothers of adults with intellectual disability and mental illness.

BACKGROUND: Mothers who have a child with intellectual disability (ID) or mental illness face a lifetime of caregiving responsibilities and challenges. The present study investigated changes over time in how mothers cope with the challenges of caring for an adult child with disabilities and the effects of changes in coping on maternal well-being. METHODS: A sample of 246 ageing mothers of adults with ID and 74 mothers of adults with mental illness was drawn from two parallel longitudinal studies of later-life caregiving. RESULTS: There was considerable variability at the individual level in the degree to which mothers changed over time in their use of problem-focused and emotion-focused coping strategies. For both groups, an increase in their use of emotion-focused coping led to declining levels of well-being. For the parents of adults with ID, an increase in their use of problem-focused coping resulted in a reduction in distress and an improvement in the quality of the relationship with their adult child. For the parents of adults with mental illness, an increase in the use of problem-focused coping had no effect on levels of distress, but led to an improved relationship with their adult child. CONCLUSIONS: The present study underscores the importance of coping in the lives of older mothers of adults with disabilities.

The usefulness of F-18 deoxyglucose whole-body positron emission tomography (PET) for re-staging of renal cell cancer.

PURPOSE: The use of whole-body PET for re-staging of renal cell carcinoma has not been investigated. The aim of the current study was to examine the diagnostic accuracy and clinical usefulness of whole-body PET imaging for re-staging of renal cell cancer. PATIENTS AND METHODS: Clinical PET was performed for re-staging in 36 patients with advanced renal cell cancer. Written reports of imaging studies (including CT, MRI, US, plain film and bone scan), patient history, and extensive chart notes were used to define the clinical stage before PET (pre-PET stage). The written PET report was used to define the clinical stage after PET (PET stage). Reports were used to determine the accuracy of PET for re-staging renal cell cancer and for defining biopsy proven lesions. Clinical parameters and biopsy proven lesions served as reference for the accuracy of PET for re-staging renal cell cancer. RESULTS: PET classified the clinical stage correctly in 32/36 patients (89%) and was incorrect in 4/36 (11%) (sensitivity and specificity: 87% and 100%). In 20 patients, 25 suspicious lesions were biopsied within 3.2 +/- 6.7 months of the PET study. Of these, 17 were malignant and 8 were benign. PET correctly classified 21/25 (84%) of the biopsied lesions (sensitivity and specificity: 88% and 75%). CONCLUSION: PET re-stages renal cell cancer with a diagnostic accuracy of 89%. Its diagnostic accuracy for classifying biopsy proven anatomic lesions as malignant or benign was 84%. These findings suggest that PET is useful in characterizing anatomic lesions of unknown significance in patients with renal cell cancer.

Impact of whole-body 18F-FDG PET on staging and managing patients with breast cancer: the referring physician's perspective.

UNLABELLED: FDG PET has emerged as an important clinical imaging modality for diagnosing and staging cancer. However, the impact of FDG PET on staging and managing patients with breast cancer from the referring physician's point of view is unknown. METHODS: The referring physicians of 160 breast cancer patients received standardized questionnaires inquiring if and how PET findings altered their patient's stage and their clinical management decisions. Management changes were classified as intermodality if the change was from one modality to another (e.g., medical to surgical, surgical to radiation, medical to no treatment, and vice versa) or as intramodality if the change was within the same modality (e.g., altered medical or radiotherapy approach). RESULTS: Fifty of the 160 surveys were completed (31% response rate). PET changed the clinical stage in 36% of patients (28% upstaged, 8% downstaged) and resulted in intermodality changes in 28% of patients and intramodality changes in 30% of patients. CONCLUSION: The results of this prospective survey show that FDG PET has a major impact on the management of breast cancer patients, influencing both clinical stage and management in more than 30% of patients.

Quality of life of adults with mental retardation/developmental disabilities who live with family.

In this paper, we review the literature related to the quality of life of adults with mental retardation/developmental disabilities (MR/DD) who live at home with their families. We examine the nature of the relationships between adults with MR/DD and their parents and siblings, the social worlds of adults with MR/DD, age-related functional and health issues that affect their quality of life, the range of services and supports provided to them, and familial efforts to plan for their continued well-being when parental care is no longer viable. Individual characteristics associated with these dimensions and/or more compromised quality of life profiles are identified. The paper concludes with recommendations for expanded research on the quality of life of adults with MR/DD who live in the parental home, a topic which has received markedly less attention than the quality of life of adults who live in publicly supported residential settings. MRDD Research Reviews 7:105-114, 2001.

Life course impacts of parenting a child with a disability.

We contrasted parents who had a child with a developmental disability, a serious mental health problem, and a normative comparison group with respect to parental attainment and well-being at mid-life. Data are from the Wisconsin Longitudinal Study, collected when the respondents were 18, 36, and 53 or 54, on average. Although similar at age 18, group patterns of attainment and well-being diverged thereafter. Parents of a child with a developmental disability had lower rates of employment, larger families, and lower rates of social participation but were similar to parents without a child with a disability in educational and marital status, physical health, and psychological well-being. Parents whose child had a serious mental health problem had normative patterns of educational and occupational attainment and marriage, but elevated levels of physical symptoms, depression, and alcohol symptoms at mid-life.

Continuity or discontinuity of family involvement following residential transitions of adults who have mental retardation.

Family involvement with adults who have mental retardation following a residential transition to a nonparental living situation was examined. We found that aging mothers were highly involved in the relocation process and had frequent contact and continued emotional involvement with their adult child. Mothers became increasingly satisfied with their level of contact with their child over time, less worried about the future, and had decreasing levels of direct caregiving and contact with residential staff. Adult siblings reported improved sibling relationships over time. Siblings whose brother or sister moved out of the parental home increased their shared activities and felt less pessimistic about the future. Findings address a critical gap in knowledge about the life course roles of families of persons with mental retardation.

Impact of 18F-FDG PET on managing patients with colorectal cancer: the referring physician's perspective.

UNLABELLED: Whole-body PET imaging with 18F-FDG has been used successfully to stage colorectal cancer. However, the impact of FDG PET on patient management from the referring physician's point of view has not been determined. METHODS: A questionnaire was sent to referring physicians to determine whether and how PET altered the management of colorectal cancer patients. Management changes, when present, were classified as intermodality (e.g., medical to surgical, surgical to radiation, medical to no treatment) or intramodality (e.g., altered medical, surgical, or radiotherapy approach). RESULTS: Of 60 responses from referring physicians, changes in clinical stage were reported for 25 patients (42%). Among these, the disease was upstaged in 20 patients (80%) and downstaged in 5 patients (20%). The PET findings contributed to intermodality management changes in 22 of the 60 patients (37%), intramodality changes in 11 patients (18%), a combination of management changes in 4 patients (7%), and no change in 19 patients (32%). Two of the 60 patients (3%) had other changes, and no response to this question was received for the remaining 2 patients (3%). As a result of PET findings, physicians avoided major surgery in 41% of patients for whom surgery was the intended treatment. CONCLUSION: This survey-based study of referring physicians shows that FDG PET had a major impact on the management of colorectal cancer patients and contributed to changes in clinical stage and major management decisions in >40% of patients.

Characterization of hilar lymph node by 18F-fluoro-2-deoxyglucose positron emission tomography in healthy subjects.

One hundred and seventy-nine images were collected from healthy subjects who underwent whole-body 18F-fluoro-2-d-deosyglucose positron emission tomography (FDG-PET) for health examination. Images showing visually increased FDG uptake based on a five-point visual scale in the hilar regions were included for analyses. We evaluated the sizes, standard uptake values (SUV), and lesion-to-background (L/B) ratios of the hilar lymph nodes (HLN). Fifty of 179 (28%) subjects had visually increased FDG uptake in the hilar regions with a total of 84 HLN. By a five-point visual scale, 67 out of 84 (79.8%) HLN were grade 2, 16 out of 87 (19%) were grade 3, and 1 out of 84 (1.2%) was grade 4. The average size of the HLN was 1.55 x 1.46 cm. SUV of the HLN ranged from 1.132-2.975 with an average of 1.8 +/- 0.44. L/B ratio of the HLN ranged from 1.05-2.63 with an average of 1.52 +/- 0.39. Twenty-eight % of healthy subjects who underwent whole-body FDG-PET demonstrated visually increased FDG uptake in the HLN. However, all of the 84 HLN had a size < 2 x 2 cm, SUV < 3.0 and L/B ratios < 3.

Tales full of sound and fury: a cultural approach to family therapeutic work and research in rural Scandinavia.

The concept of "culture" figured prominently in the development of family therapy. Recent conceptualizations, however, have tended to focus primarily on the ideational dimensions of culture. While not disputing that meanings and other ideas constitute significant features of group lifeways, this article proposes a return to earlier anthropological framings that incorporate material and ideational dimensions of cultures. To illustrate how his expanded concept may serve as a guide for therapeutic work, the article describes therapy with one family at a clinic in rural Scandinavia. We especially focus on the place of key symbols as historical links between the ideational and material dimensions of cultures. The perspective developed here is one of seeing cultures as sets of interpenetrating actions and ideas shaped by as well as shaping their practitioners.

Performance testing of a multimetals continuous emissions monitor.

A prototype instrument, designed for continuous monitoring of hazardous air pollutant metal emissions in the stack gases of waste incinerators and industrial furnaces, has undergone a performance evaluation that included a relative accuracy test audit. The test results confirmed the instrument's ability to accurately measure stack gas metal concentrations and thus validate the applicability of the candidate technique for compliance assurance monitoring for the specific source involved. The analytical accuracy of this system, documented during the recent test exercise, represents a significant improvement in performance relative to that previously achieved, and can be attributed with certainty to the recent implementation of a shrouded nozzle sampling system. By reducing deposition losses of particulate matter in the extracted stack gas stream to acceptable levels, presentation of a more representative sample stream to the elemental analyzer has been accomplished. The present paper discusses the design and operation of the multimetals continuous emissions monitor (MMCEM), the shrouded nozzle sampling system, and the results of recent performance testing.

The dynamics of caregiving: transitions during a three-year prospective study.

This prospective study (n = 476) examined 3 types of caregiving transitions experienced by wives and daughters of older persons: entry, institutionalization, and bereavement. Daughters were more likely to enter the caregiving role than wives, but the impact of entering the role was more pronounced for wives. After becoming a caregiver, wives decreased in their participation in leisure activities, perceptions of quality of family relations, and marital satisfaction. Daughter caregivers were more likely than wives to place their care recipient in an institution, and they increased in social participation and decreased in subjective burden after placement. Roughly the same percentage of wife and daughter caregivers were bereaved during the study period, and for wives bereavement was accompanied by an increase in social involvement and personal growth. The results underscore the highly dynamic nature of the caregiving career and the importance of the kinship relationship between caregiver and care recipient in conditioning the effects of caregiving transitions.

Brothers and sisters of adults with mental retardation: gendered nature of the sibling relationship.

Differences and similarities between brothers and sisters of adults with mental retardation with respect to the instrumental (caregiving, companionship) and affective (positive affect, emotion) aspects of the sibling relationship were examined. Sisters scored higher than brothers in the caregiving, companionship, and positive affect aspects of the sibling relationship. Brothers' sibling relationships were conditioned by the gender of the sibling with mental retardation. Brothers of brothers with mental retardation had a more favorable emotional response than did brothers of sisters. Two-wave longitudinal data showed that sibling involvement and closeness increased over time, but was dependent upon changes in the health of the mother. The findings are discussed in relation to normative patterns in the sibling relationship across the life course.

Differences in coping effectiveness and well-being among aging mothers and fathers of adults with mental retardation.

In this longitudinal study, we examined stress and coping processes among 133 married mothers (age 59 to 83) and fathers (age 56 to 84) of adults with mental retardation (age 19 to 53). There were no differences between mothers and fathers with respect to their frequency of use of emotion-focused coping, but mothers used significantly more problem-focused coping strategies than did their husbands. For mothers, greater use of problem-focused coping strategies and lower use of emotion-focused coping buffered the impacts of caregiving stress on their psychological well-being. However, for fathers, no buffering effects of coping were detected. The implications of gender differences in coping effects were examined in the context of the impact of lifelong caregiving.

Comparison of helical computerized tomography, positron emission tomography and monoclonal antibody scans for evaluation of lymph node metastases in patients with prostate specific antigen relapse after treatment for localized prostate cancer.

PURPOSE: We compare the detection of metastatic disease by helical computerized tomography (CT), positron emission tomography (PET) with F-18 fluorodeoxyglucose and monoclonal antibody scan with 111indium capromab pendetide in patients with an elevated prostate specific antigen (PSA) after treatment for localized prostate cancer. MATERIALS AND METHODS: A total of 45 patients with an elevated PSA (median 3.8 ng./ml.) were studied following definitive local therapy with radical prostatectomy in 33, radiation therapy in 9 and cryosurgery in 3. CT of the abdomen and pelvis, and whole body PET were performed in all patients, of whom 21 also underwent monoclonal antibody scan. Lymph nodes 1 cm. in diameter or greater on CT were considered abnormal and were sampled by fine needle aspiration in 12 patients. RESULTS: PET and CT were positive for distant disease in 50% of 22 patients with PSA greater than 4, and in 4 and 17%, respectively, of 23 with PSA less than 4 ng./ml. The detection rate for metastatic disease was similar for CT and PET, and higher overall than that for monoclonal antibody scan. Monoclonal antibody scan was true positive in only 1 of 6 patients, while PET was true positive in 6 of 9 with CT guided fine needle aspiration proved metastases. CONCLUSIONS: CT and PET each detected evidence of metastatic disease in 50% of all patients with a high PSA or PSA velocity (greater than 4 ng./ml. or greater than 0.2 ng./ml. per month, respectively). Both techniques are limited for detecting metastatic disease in patients with a low PSA or PSA velocity. Our data suggest that monoclonal antibody scan has a lower detection rate than CT or PET.