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PubMed1998

The family impact of childhood atopic dermatitis: the Dermatitis Family Impact Questionnaire.

Little information is available about the effect of childhood atopic dermatitis (AD) on family function. The aim of this study was to identify the areas of family life most affected and their perceived importance. Intensive qualitative interviews with 34 families were conducted and 11 basic problem areas were identified. A detailed questionnaire was prepared, part of which addressed the perceived importance of particular issues using the framework of multi-attribute utility theory. The results from using this questionnaire in 41 families were analysed and a shorter 10-question one-page Dermatitis Family Impact (DFI) questionnaire designed (maximum score = 30). In affected families the mean DFI score was 9.6 +/- 7.0 (range 0-27, n = 56) and in unaffected families the mean score was 0.4 +/- 0.9 (range 0-3, n = 26, P < 0.0001). The DFI could potentially be used as an extra measure in clinical studies, or to help guide appropriate management of AD.

Adolescent↗
PubMed2000

Responses of family caregivers and family members with Alzheimer's disease to an activity kit: an ethnographic study.

This qualitative evaluation research focused on individuals with Alzheimer's disease cared for at home by a family caregiver. It aimed to assess the responses of family caregivers and family members to an activity kit containing 20 therapeutic activities (The BAG or 'Be Active with Games' kit). In-depth interviews with and observations of 21 caregiver/member dyads were analysed according to Spradley's ethnographic method. Responses to The BAG were contingent upon the family member's symptoms, prior experience, and time of day. For some caregivers The BAG was useful in filling time, inspiring additional activities, facilitating connections with the family member, and connecting family members with their past; for others it was an additional burden in an already frenetic life. The BAG engaged some family members with AD while it 'insulted' others. The value of activities for individuals with AD requires more theoretical and methodological exploration.

Activities of Daily Living↗
PubMedDate not supplied

[The testing and validation of the German version of the impact on family scale in families with children with disabilities].

Despite increased interest in the wellbeing of families with children with chronic conditions and disabilities, instruments to assess family impact of health conditions are still lacking in German speaking countries. The Impact on Family Scale has been developed in the Anglo-american literature as a self report instrument to assess the consequences of chronic conditions and disability in childhood and adolescence for the family. The present paper describes the translation and psychometric testing of a German version of the Impact on Family scale (Familien-Belastungs[FaBel]-Questionnaire). The questionnaire contains 33 Likert-scaled items to assess the general negative impact of parents, the description of social relationships, the concern for siblings, the financial impact and problems in coping as well as a total score. The FaBel questionnaire was used and tested for psychometric criteria of reliability and validity in a cross-sectional study of 273 families with children with chronic conditions and disabilities. The results of this psychometric testing of the FaBel-Questionnaire show acceptance by responders, acceptable construct validity, good internal consistency and discriminant validity. The psychometric structure of the questionnaire corresponds with psychometric results with another German population of children with chronic conditions. The results suggest the applicability of the instrument to assess family impact of chronic disease and disability in children and adolescents.

Adolescent↗
PubMed2002

Familial ACTH-independent Cushing's syndrome with bilateral macronodular adrenal hyperplasia clinically affecting only female family members.

Primary adrenal hyperplasia, which may occur as a familial disorder, is a rare cause of ACTH-independent Cushing's syndrome. In most of these cases the underlying pathology is primary adrenocortical micronodular dysplasia. Very few cases of familial Cushing's syndrome due to primary macronodular adrenal hyperplasia have been described. We report a family with seven affected family members. The pedigree indicates an autosomal dominantly inherited disorder. Interestingly only female family members developed the clinically apparent syndrome. The only available obligatory male gene carrier failed to adequately suppress his plasma cortisol level on overnight dexamethasone suppression test. His adrenal glands showed nodular enlargement on abdominal computed tomographic imaging. Screening of the MEN 1 gene and genetic analysis of the hot spot regions of the GNAS 1 (codons 201 and 227) and GNAI 2 (codons 179 and 205) genes did not show any mutations in the constitutional DNA or the adrenal tissue DNA of the index patient. In conclusion, this family is the largest kindred reported in the literature with ACTH-independent Cushing's syndrome due to autosomal dominant inherited macronodular adrenocortical hyperplasia. Four currently alive and affected family members in two generations and further careful observation of the yet unaffected members of the third available generation might offer the opportunity to identify the still unknown gene defect in the future.

Adrenal Hyperplasia, Congenital↗
PubMed1986

Family interactions in black, lower-class families with delinquent and nondelinquent adolescent boys.

The interaction patterns of 32 black, lower-class family triads (mother-father-son), divided into two equal groups by the son's delinquency status, were assessed across self-report and observational measures of family affect, conflict, and dominance. In support of previous research with white, middle-, and lower-middle class families, the results generally indicated that families with delinquent boys were less warm and more conflictual than families with nondelinquent boys. Relative to parents of nondelinquents, parents of delinquents were more conflictual on expressive family issues than on instrumental issues. In addition, the results showed that the content of the family interaction task (expressive vs. instrumental) influenced observed patterns of intrafamily dominance. The theoretical and practical implications of these findings are discussed.

Adolescent↗
PubMed2000

Scholastic achievement and family marital structure: Bedouin-Arab adolescents from monogamous and polygamous families in Israel.

In a sample of Bedouin-Arab adolescents from monogamous and polygamous families in the Negev region of Israel, the authors examined scholastic achievement levels in the subjects of Arabic, English, Hebrew, and mathematics. There were no significant differences in the scholastic achievement levels in those 4 disciplines between adolescents from monogamous families and those from polygamous families. There was, however, a significant interaction between gender and family marital structure for Hebrew scores: Polygamous family structures tended to engender higher Hebrew scores for the male participants, whereas monogamous family structures tended to engender higher Hebrew scores for the female participants. However, the major overall finding was that polygamous family marital structures did not affect deleteriously the scholastic achievement levels of the Bedouin-Arab participants.

Achievement↗
PubMed1985

Serious illness and family dynamics. 2. Changes in consulting patterns of the afflicted family members.

This article examines the effect of an acute serious illness in one member of a family on the subsequent health behaviour of that patient. The number of consultations made before and after their acute serious illness was measured for 35 patients and compared with a control group of 708 family members who had not experienced an illness. An increase in the number of minor and serious complaints was noted in the year after the illness. In the case of minor complaints the changes ranged from four more complaints to six less, thus enabling the effect of background family characteristics--flexibility, conflict avoidance and family strain--to be investigated. More flexibility and lower family strain correlated with less presented morbidity. Other variables such as age and size of family also correlated with morbidity. The role of the general practitioner in giving assistance to patients affected by a life-threatening disease and their family members therefore goes much further than just the treatment of the acute illness itself.

Acute Disease↗
PubMed1993

The influence of health on family contacts and family feelings in advanced old age: a longitudinal study.

This study provides a longitudinal analysis of the influences of health, age, gender, and socioeconomic status on family contacts and family feelings in a sample of 62 members of the Berkeley Older Generation Study. Stability in family contacts and in family feelings was observed over 14 years of advanced old age. Of the four predictor variables, health and socioeconomic status accounted for the largest proportion of observed variance. Contrary to our hypotheses, study participants in better health had greater amounts of contact with family than did those in poorer health. The former also had more feelings of closeness to family members, a finding that may reflect greater possibilities for reciprocity between elders in good health and their family members.

Activities of Daily Living↗
PubMed1999

Design and analysis issues in a population-based, case-control-family study of the genetic epidemiology of breast cancer and the Co-operative Family Registry for Breast Cancer Studies (CFRBCS).

BACKGROUND: Historically, studies of the "genetic epidemiology" of cancer have used nonsystematically sampled kindreds with numerous cases of cancer across multiple generations. From the epidemiologic viewpoint, it is difficult to extrapolate findings to the population because of the ad hoc ascertainment of these atypical, ill-defined families. Since 1992, we have been conducting a population-based, case-control-family study of breast cancer. METHODS: Families are identified through a single, population-sampled proband, who is either affected or unaffected, making adjustment for ascertainment straightforward. Administered questionnaires and blood samples are sought from cases, controls, and specified sets of relatives. From 1996 through 1999, a further 1200 case families have been recruited as part of the Co-operative Family Registry for Breast Cancer Studies (CFRBCS). Issues relevant to the study design and analysis are discussed. RESULTS: Epidemiologic and genetic findings published to date are summarized. In particular, this population-based study has shown that the so-called "high-risk" families containing multiple cases of breast cancer are not typical of families in the general population in which BRCA1 or BRCA2 mutations are segregating. Most "hereditary" cancers are "sporadic." CONCLUSION: The collection of DNA, as well as data on disease status and risk factors, from population-sampled sets of relatives provides a powerful resource for addressing genetic and environmental determinants of cancer. A population-based multicenter, multidisciplinary enterprise, such as has been developed by the CFRBCS, may become a model for future research in cancer epidemiology, allowing genetic and environmental risk factors to be put into a proper population perspective.

Breast Neoplasms↗
PubMedDate not supplied

Patient- and family-centered perinatal care: partnerships with childbearing women and families.

Providing patient- and family-centered care is not a simple endeavor. It requires a transformation in organizational culture that is reflected in a myriad of details at the departmental, clinical, and individual provider and patient levels. Patient- and family-centered practitioners know that it is not a recipe or formula of specific practices, but an evolving approach that guides policy and program development, facility design, decision making, and daily interactions throughout the healthcare system. Today, momentum for patient- and family-centered care continues to build. It is supported by a growing body of research and by prestigious organizations that are committed to involve patients and families in care and in the redesign of healthcare for the 21st century to meet the recommendations of the IOM report. This article outlines the concepts of patient- and family-centered care and describes how they link with and differ from traditional concepts of family-centered maternity care. Partnerships with childbearing women and their families in clinical settings and in healthcare redesign that enhance quality, safety, and experience of care are described.

Community Participation↗
PubMed2003

Personality judgments in adolescents' families: the perceiver, the target, their relationship, and the family.

The present study investigated whether personality judgments involve different processes in a family setting than in a nonfamily setting. We used the Social Relations Model to distinguish the effects of perceiver, target, perceiver-target relationship, and family on personality judgments. Family members of families with adolescents judged their own and the other members' Big Five factors. Judgments were found to depend on the relevance of personality factors within the family setting: Agreeableness and Conscientiousness were judged most consistently. Large relationship variance indicated that parents adjust their judgments to the target family member; large perceiver variance indicated that adolescents judge family members' personalities rather similarly. However, a comparison of self- and other-judgments showed adolescents' judgments to be no more related to their self-perceptions than parents' judgments. We concluded that the relevance of personality factors may differ on specific tasks within a setting.

Adolescent↗
PubMed2000

Testing between-family associations in within-family comparisons.

Using behaviorally discordant siblings to test for gene-behavior associations is a common tool in molecular genetics, because the within-family contrast offers a research design that avoids confounds inevitable in all between-family comparisons of unrelated individuals. We propose a similar strategy to assess the behavior-behavior associations on which much of psychological science is built. Between-family correlations of personality test scores (e.g., sensation seeking) and behavioral outcomes (e.g., substance use) may be mediated by variables that differ between families (e.g., social class or religiosity) and correlate with both personality and outcome. Contrasting twin and nontwin siblings who were highly discordant for behavioral correlates of substance use, we tested whether between-family behavioral correlations replicated within families. Some, but not all, did. Within-family analyses of behaviorally discordant siblings may find wide application in efforts to clarify the meaning of correlational research data.

Age Factors↗
PubMed1994

Family acceptance and family control as predictors of adjustment in young adolescents: linear, curvilinear, or interactive effects?

This study assessed the relation between adjustment and perceptions of both family acceptance and family control in 2 samples of young adolescents, ns = 851 (mean age = 12.36 years) and 269 (mean age = 10.89 years), respectively. In Sample 1, dimensions of adjustment included self-reports of psychosocial competence and problems with self-regulation. In Sample 2, adjustment was indexed by peer ratings of likability. In both samples, family acceptance and family control were positively related to adjustment. However, in Sample 1, family control was also curvilinearly related to adjustment but in a different pattern for the 2 adjustment scores. Specifically, the positive relation between family control and psychosocial competence was stronger at progressively higher levels of family control, whereas low--but not moderate or high-levels of control were related to many self-regulation problems. In light of evidence that acceptance and control are complexly related to adjustment, we recommend that researchers routinely examine curvilinear effects in this area of study.

Adolescent↗
PubMed1994

Family dynamics and infant temperament in Danish families.

Transition to parenthood involves the fine balance of family dynamics which both affect, and are affected by, the infant's temperament. The purpose of this study was to investigate changes in family dynamics over the transition to parenthood and the relationship of family dynamics to infant temperament. A sample of 99 families in Odense, Denmark, completed the Family Dynamics Measure in the third trimester of pregnancy and again when the infant was 8-9 months old. At this second time, the mothers also completed the Revised Infant Temperament Questionnaire. Overall we found small changes, although always in a negative direction, in family dynamics over this transition. The largest change was an increase in perceived role conflict reported by both mothers and fathers. Mothers reported more role conflict than fathers. Positive family dynamics were related to infant rhythmicity.

Adult↗
PubMed2006

Linkage analysis and disease models in benign familial infantile seizures: a study of 16 families.

PURPOSE: Benign familial infantile seizures (BFIS) is a genetically heterogeneous condition characterized by partial seizures, onset age from 3 to 9 months, and favorable outcome. BFIS loci were identified on chromosomes 19q12-13.1 and 16p12-q12, allelic to infantile convulsions and choreathetosis. The identification of SCN2A mutations in families with only infantile seizures indicated that BFNIS and BFIS may show overlapping clinical features. Infantile seizures also were in a family with familial hemiplegic migraine and mutations in the ATP1A2 gene. We have examined the heterogeneous genetics of BFIS by means of linkage analysis. METHODS: Sixteen families were examined. Probands underwent neurologic examination, at least one EEG recording, and, when possible, brain CT and MRI. Clinical information about relatives was collected. Families with SCN2A or ATP1A2 mutations were excluded from the study. Chromosome 16p and 19q loci were examined by linkage analysis using two models that differed in penetrance rate. Genetic heterogeneity was evaluated with both models. RESULTS: Clinical information was available for 124 members of affected families. BFIS was diagnosed in 69 subjects. One patient without BFIS had a single febrile seizure, and another had rare episodes of paroxysmal dystonia. Evidence of linkage was obtained only for chromosome 16. Moreover, the high penetrance allowed the identification of genetic heterogeneity. CONCLUSIONS: Our data confirm the relevance of the chromosome 16 locus in BFIS and suggest the presence of an additional locus. This study shows that the genetic model used affects the outcome of linkage analysis.

Brain↗
PubMed2006

Family-specific approaches to the analysis of case-control family data.

Case-control studies augmented by the values of responses and covariates from family members allow investigators to study the association between the response and genetics and environment by relating differences in the response directly to within-family differences in covariates. However, existing approaches for case-control family data parameterize covariate effects in terms of the marginal probability of response, the same effects that one estimates from standard case-control studies. This article focuses on the estimation of family-specific covariate effects and develops efficient methods to fit family-specific models such as binary mixed-effects models. We also extend the approach to cover any setting where one has a fully specified model for the vector of responses in a family. We illustrate our approach using data from a case-control family study of brain cancer and consider the use of weighted and conditional likelihood methods as alternatives.

Biometry↗
PubMed1978

The family life cycle: developmental crises and their structural impact on families in a community mental health center.

A typology for troubled families was developed based on the configuration of family members and the position of the identified patient within the family structure. This typology was investigated by surveying the demographic and clinical characteristics of 110 families of patients treated in a day hospital. Four types or "constellations" were found in the sample population. The families in the four Constellations differed significantly from one another in the gender, age, and diagnoses of the identified patient and the income level of the families. The Constellations thus appeared to constitute distinct clinical entities in the population studied. The reasons for the differences among Constellations are discussed in terms of the stress families experience during developmental crises involving structural change.

Affective Symptoms↗
PubMed1987

The Family Rorschach with families of schizophrenics: replication and extension.

Using a modified version of procedures outlined by Shapiro and Wild (9), this study evaluates the use of a Family Rorschach technique as a means of distinguishing families of schizophrenic patients from those of psychiatrically hospitalized, nonschizophrenic individuals. The patients were diagnosed using Research Diagnostic Criteria, and families were matched for age, intelligence, and socioeconomic characteristics. Results showed that the families with schizophrenic offspring scored significantly lower (that is, they had more communication and attentional difficulties) than those with nonschizophrenic offspring; offspring gender and family constellation had little effect on scores. Subsequent analyses indicated that lower scores were not simply a reflection of the psychoticism of the patient. These findings suggest that families of schizophrenics have interpersonal communication difficulties that compromise their ability to maintain a shared focus of attention. The findings are consistent with the suggestion that deviant patterns of family communication in interaction with genetic vulnerability in an offspring may result in the development of a schizophrenic disorder.

Adult↗