Accuracy of knowledge of family history of cardiovascular disorders

There has been increased interest in the use of familial trends in physical and psychological disorders for identifying individuals at risk; research on individuals who have relatives with certain health problems may contribute to knowledge of etiology. In addition, accurate family health information may allow targeting of prevention and early detection programs to minimize cost and maximize utility. This study compared 292 undergraduates' reports of their parents' and grandparents' histories of six medical disorders with the parents' reports. Results showed moderate agreement concerning the parents' health, but substantial disagreement concerning the grandparents' health. Demographic and personality variables did not predict accuracy of students' reports of parental hypertension. Among the disorders, differences in agreement of reporting arose; the most salient condition, heart attack, had the highest agreement for both parents and grandparents. These results suggested that caution is necessary in evaluating family health information from subjects in research and from target individuals in prevention programs. This problem is especially serious for disorders such as hypertension, which is less salient and which also shows age-related penetrance, with the disorder often not evident until the 5th or 6th decade of life.     

Infant illness severity and family adjustment in the aftermath of NICU hospitalization

Up to 15% of parents have an infant who will spend time in a neonatal intensive care unit (NICU). After discharge, parents may care for a medically fragile infant and worry about their development. The current study examined how infant illness severity is associated with family adjustment. Participants included parents with infants who had been discharged from the NICU 6 months to 3 years prior to study participation (N = 199). Via a Qualtrics online survey, parents reported their infants’ medical history, parenting stress, family burden, couple functioning, and access to resources. Multivariable regression analyses revealed that more severe infant medical issues during hospitalization (e.g., longer length of stay and more medical devices) were associated with greater family burden, but not stress or couple functioning. Infant health issues following hospitalization (i.e., medical diagnosis and more medical specialists) were associated with greater stress, poorer couple functioning, and greater family burden. Less time for parents was associated with increased stress and poorer couple functioning. Surprisingly, parents of infants who were rehospitalized reported less stress and better couple functioning, but greater family burden. Family-focused interventions that incorporate psychoeducation about provider−patient communication, partner support, and self-care may be effective to prevent negative psychosocial sequelae among families.     

Type A behavior pattern, parental history of hypertension, and cardiovascular reactivity in college males

Two risk factors for cardiovascular disorders, parental history of hypertension and the Type A behavior pattern, were investigated concurrently with respect to cardiovascular reactivity to challenging situations. Sixty-four college males were given both the Structured Interview (SI) and Jenkins Activity Survey (JAS) for the Type A behavior pattern and a family health questionnaire to determine parental history of hypertension. The students were monitored for blood pressure (BP), heart rate (HR), and pulse transit time (PTT) response to four tasks: cold pressor, isometric handgrip exercise, a reading comprehension task, and backwards digit span. Type As based on SI classification had significantly higher HR levels across all tasks than did Type Bs, as well as higher diastolic BP levels in the cold pressor task. No main effects for Type A-B using JAS classification were found. Positive parental history students had higher HR and shorter PTT levels across all the tasks. Type A and parental history did interact in a limited way on some tasks, but the interactions were also dependent on the Type A classification used.     

Inaccuracy of family health information: implications for prevention

There is a conflict between the rest of the family's right to medical confidentiality and the individual's need to know about health risks for which she or he may show increased susceptibility. Research has shown increased risk in the development of a variety of disorders for those with a positive family history. In many cases the familial predisposition appears to interact with alterable environmental factors (e.g., diet). This suggests a need for targeting of preventive efforts at those at highest risk. As success of early detection and prevention programs increase, there will appear an increased need for accurate family health history information as an aid in early identification. Research on accuracy of family health information (Hastrup, Hotchkiss & Johnson, this issue) shows extensive inaccuracy. Implications of inaccurate information for self-directed and public health prevention are described. Research and progress in prevention will likely accelerate, continuing to alter the traditional view from one of the individual with a personal health history to one in which individuals share a familial (genetic + shared environment + similar behavior patterns) risk with others, who may also benefit from preventive programs.     

The role of National Library of Medicine web sites in newborn screening education

Expanded newborn screening programs and subsequent detection of rare genetic disorders challenge parents and their medical providers to learn about the treatment and management of these disorders. Many people seek medical information on the Internet but may encounter requests for registration or fees, or find that resources are out of date, difficult to understand, or buried in advertisements. The U.S. National Library of Medicine (NLM), a component of the National Institutes of Health, provides web-based resources that address the challenges of newborn screening education. These resources include MedlinePlus, Genetics Home Reference, ClinicalTrials.gov, and PubMed. NLM websites are not commercial, do not require registration or fees, and provide varied levels of information for a continuum of audiences from low-literacy consumers to health professionals. Using phenylketonuria as an example, this study describes the information that parents and their medical providers can find through NLM resources. NLM has embraced the digital age and provides the public with reliable, accurate, and up-to-date educational materials.     

Early adolescent age and gender differences in patterns of emotional self-disclosure to parents and friends

This study explored adolescent age and gender differences in patterns of emotional self-disclosure to parents and friends. The sample consisted of 174 junior high school students between the ages of 12 and 15. Results revealed that females exhibited greater emotional self-disclosure to parents and peers than did males, and that emotional self-disclosure to friends was greatest among older adolescents. In addition, while younger adolescents preferred to disclose information about their emotional state to parents, older adolescents chose friends. Exploratory hierarchical regression analyses revealed that emotional disclosure to parents was most strongly associated with adolescent perceptions of the openness of family communication, family cohesion, and satisfaction with family relationships. Emotional disclosure to friends was associated with adolescent self-esteem in the peer context and identity development. The results are discussed in terms of the complementary socializing processes that may operate within the contexts of family and friends.     

The roles of family history of dyslexia,language, speech production and phonological processing in predicting literacy progress

It is well established that speech, language and phonological skills are closely associated with literacy, and that children with a family risk of dyslexia (FRD) tend to show deficits in each of these areas in the preschool years. This paper examines what the relationships are between FRD and these skills, and whether deficits in speech, language and phonological processing fully account for the increased risk of dyslexia in children with FRD. One hundred and fifty‐three 4–6‐year‐old children, 44 of whom had FRD, completed a battery of speech, language, phonology and literacy tasks. Word reading and spelling were retested 6 months later, and text reading accuracy and reading comprehension were tested 3 years later. The children with FRD were at increased risk of developing difficulties in reading accuracy, but not reading comprehension. Four groups were compared: good and poor readers with and without FRD. In most cases good readers outperformed poor readers regardless of family history, but there was an effect of family history on naming and nonword repetition regardless of literacy outcome, suggesting a role for speech production skills as an endophenotype of dyslexia. Phonological processing predicted spelling, while language predicted text reading accuracy and comprehension. FRD was a significant additional predictor of reading and spelling after controlling for speech production, language and phonological processing, suggesting that children with FRD show additional difficulties in literacy that cannot be fully explained in terms of their language and phonological skills.     

Not the End of the Odyssey: Parental Perceptions of Whole Exome Sequencing (WES) in Pediatric Undiagnosed Disorders

Due to the lack of empirical information on parental perceptions of primary results of whole exome sequencing (WES), we conducted a retrospective semi-structured interview with 19 parents of children who had undergone WES. Perceptions explored during the interview included factors that would contribute to parental empowerment such as: parental expectations, understanding of the WES and results, utilization of the WES information, and communication of findings to health/educational professionals and family members. Results of the WES had previously been communicated to families within a novel framework of clinical diagnostic categories: 5/19 had Definite diagnoses, 6/19 had Likely diagnoses, 3/19 had Possible diagnosis and 5/19 had No diagnosis. All parents interviewed expressed a sense of duty to pursue the WES in search of a diagnosis; however, their expectations were tempered by previous experiences with negative genetic testing results. Approximately half the parents worried that a primary diagnosis that would be lethal might be identified; however, the hope of a diagnosis outweighed this concern. Parents were accurately able to summarize their child’s WES findings, understood the implications for recurrence risks, and were able to communicate these findings to family and medical/educational providers. The majority of those with a Definite/Likely diagnosis felt that their child’s medical care was more focused, or there was a reduction in worry, despite the lack of a specific treatment. Irrespective of diagnostic outcome, parents recommended that follow-up visits be built into the process. Several parents expressed a desire to have all variants of unknown significance (VUS) reported to them so that they could investigate these themselves. Finally, for some families whose children had a Definite/Likely diagnosis, there was remaining frustration and a sense of isolation, due to the limited information that was available about the diagnosed rare disorders and the inability to connect to other families, suggesting that for families with rare genetic disorders, the diagnostic odyssey does not necessarily end with a diagnosis. Qualitative interviewing served a meaningful role in eliciting new information about parental motivations, expectations, and knowledge of WES. Our findings highlight a need for continued communication with families as we navigate the new landscape of genomic sequencing.     

Female Adolescents with Eating Disorders,Parental Psychopathological Risk and Family Functioning

Epidemiological studies on adolescents with eating disorders demonstrate a high prevalence of disordered eating behaviors, with a higher prevalence of eating disorders among girls. Several studies have recently demonstrated an association between female adolescents’ eating disorders, parental psychopathological risk, and an impaired family functioning with poor quality of the relationships among family members. On the basis of these premises, we conducted a cross-sectional study initially recruiting 243 families of female adolescents affected by anorexia nervosa (Group A), bulimia nervosa (Group B), and binge eating disorder (Group C) (average age 14–17) to assess their psychological profile (SCL90-R), specific representations of their family functioning (FACES-IV), and the possible effect of adolescents’ psychological profiles and parents’ psychopathological risk on family functioning. Our results indicate that adolescents and parents in Groups A, B, and C show an unequivocal psychopathological profile; in particular, adolescents with anorexia present the most severe psychopathological risk. Further, our results show that adolescents and their parents differ in their perception of their family functioning. More specifically, adolescents with anorexia perceive their family as highly disengaged, poorly interwoven, and rigid, in addition cohesion and communication qualities are perceived as low. Interestingly, parental psychopathological risk predicts adolescents’ specific perception of their family functioning. These findings may guide clinical interventions as they suggest that distinct maternal psychopathological symptoms can be associated with a variety of clinical configurations in their offspring, whereas paternal psychopathological risk may be present in adolescents suffering from all forms of eating disorders.     

Psychopathology of parenthood: Implications for mental health of children

Psychiatric illness among mothers of infants and young children is believed to have serious implications for the child's cognitive and socio-emotional development, and presents a continuing crisis in the provision of reliable parental care: frequent rehospitalizations are disruptive both for the parent-child tie, and for the stability of the family unit. This chapter reviews findings regarding the impact of maternal psychiatric disorders upon the child's development, and intervention programs designed to reduce the impact of these disorders upon both child and family. In addition to considering families in which there is major psychopathology, problems are noted among families in which “an ordinary devoted mother” shows markedly lowered morale, but does not become a part of the mental health system. Findings from a number of innovative intervention programs are summarized in terms of possible next steps in working with these troubled parents and their children.     

Health-Related Quality of Life and Perceived Need for Mental Health Services in Adolescent Solid Organ Transplant Recipients

The purpose of the current investigation was to assess interest in mental health services among parents of adolescent solid organ transplant recipients and the relationship between parent perceived need for mental health services and patient health-related quality of life (HRQOL). Sixty-three parents rated interest in receiving 10 mental health services, and patient HRQOL ratings were gathered from adolescent transplant recipients and their parents. Ninety-four percent of parents expressed some level of interest in at least one of the proposed services, with over 40 % indicating maximum interest. Parents’ perceived need for mental health services was inversely related to adolescent and parent reports of HRQOL on the behavior, mental health, family cohesion, and parental impact-emotional domains. Results suggest that parents of adolescent solid organ transplant recipients are interested in receiving mental health services for their families. Assessment of need for mental health services and HRQOL may inform the medical team of families requiring intervention.     

Parenting behaviors in parents with anxiety disorders

Anxiety disorders are familial, and although considerable evidence supports the role of genetic/biological parameters in their development, these alone do not entirely explain their etiology. In this study, the role of parenting behavior as a possible factor in the transmission of anxiety from parent to child was examined. Using interview, self-report, and direct behavioral observation, behaviors of parents with an anxiety disorder were compared to those of parents without an anxiety disorder on a number of dimensions, but particularly with respect to whether anxious parents actively inhibited their children from engaging in normal age appropriate activities. These behaviors were assessed during routine activities and in a structured non-conflictual play task. Although anxious parents did not overtly restrict their child's behavior in either type of activity, they reported higher levels of distress when their children were engaged in these activities. Similarly, the "emotional climate" in families with an anxious parent differed significantly from families without an anxious parent. The results are discussed in terms of how parenting behaviors might influence the development of maladaptive anxiety via social learning and information transfer, and their heuristic implications.     

Parents’ Communication with Siblings of Children Affected by an Inherited Genetic Condition

The objective of this study was to explore parents’ communication about risk with siblings of children affected by an inherited genetic condition, and to ascertain what level of support, if any, is required from health professionals. Semi-structured interviews were conducted with affected and unaffected children and their parents. Families were affected by one of six genetic conditions representing different patterns of inheritance and variations in age of onset, life expectancy and impact on families. Interviews were analysed using constructivist grounded theory and informed by models which focused on three different aspects of family communication. Interviews with 33 families showed that siblings’ information and support needs go largely unrecognized by health professionals and sometimes by parents. Some siblings were actively informed about the genetic condition by parents, others were left to find out and assimilate information by themselves. Siblings were given information about the current symptoms and management of the genetic condition but were less likely to know about its hereditary nature and their own potential risk. When siblings were fully informed about the condition and included in family discussion, they had a better understanding of their role within their family, and family relationships were reported to be more harmonious. The information and support needs of siblings can be overlooked. Parents with the responsibility for caring for a child affected by a genetic condition may require support from health professionals to understand and respond to their unaffected children’s need for more information about the genetic condition and its implications for the children’s own future health and reproductive decision-making.     

Genetic Counselors’ Current Use of Personal Health Records-Based Family Histories in Genetic Clinics and Considerations for Their Future Adoption

Given the widespread adoption of electronic medical records and recent emergence of electronic family history tools, we examined genetic counselors’ perspectives on the emerging technology of the personal health record (PHR)-based family history tool that links to an electronic medical record (EMR). Two-hundred thirty-three genetic counselors responded to an on-line survey eliciting current use of electronic family history (EFH) tools and familiarity with PHR-based family history tools. Additionally, after being shown a series of screen shots of a newly developed PHR-based family history tool based on the U.S. Surgeon General’s My Family Health Portrait (United States Department of Health and Human Services 2009), participants were surveyed about the perceived usefulness, ease of use, and impact on current workflow that this kind of tool would have in their practices. Eighty-three percent reported that their institution has an EMR, yet only 35 % have a dedicated space for family history. Eighty-two percent reported that less than 5 % of their patients have a PHR, and only 16 % have worked with patients who have a PHR. Seventy-two percent or more agreed that a PHR-based family history tool would facilitate communication, increase accuracy of information, ensure consistency in recording information, increase focus on actual counseling, reduce repetitive questions, improve efficiency, and increase the legibility and clarity. Our findings suggest that participants were familiar with existing EFH tools, but that the majority did not use them in practice. Genetic counselors’ adoption of such tools is limited due to non-existence of this kind of technology or inability to integrate it into their clinics. They are also strongly in favor of adopting a PHR-based family history tool in genetics clinics, but have practical concerns that must be addressed before the tool can be implemented.     

Child Welfare Versus Parental Autonomy: Medical Ethics,The Law,and Faith-Based Healing

Over the past three decades more than 200 children have died in the U.S. of treatable illnesses as a result of their parents relying on spiritual healing rather than conventional medical treatment. Thirty-nine states have laws that protect parents from criminal prosecution when their children die as a result of not receiving medical care. As physicians and citizens, we must choose between protecting the welfare of children and maintaining respect for the rights of parents to practice the religion of their choice and to make important decisions for their children. In order to make and defend such choices, it is essential that we as health care professionals understand the history and background of such practices and the legal aspects of previous cases, as well as formulate an ethical construct by which to begin a dialogue with the religious communities and others who share similar beliefs about spiritual healing. In this paper, we provide a framework for these requirements.     

Clinical Use of the Surgeon General’s “My Family Health Portrait” (MFHP) Tool: Opinions of Future Health Care Providers

This study examined medical students’ and house officers’ opinions about the Surgeon General’s “My Family Health Portrait” (MFHP) tool. Participants used the tool and were surveyed about tool mechanics, potential clinical uses, and barriers. None of the 97 participants had previously used this tool. The average time to enter a family history was 15 min (range 3 to 45 min). Participants agreed or strongly agreed that the MFHP tool is understandable (98%), easy to use (93%), and suitable for general public use (84%). Sixty-seven percent would encourage their patients to use the tool; 39% would ensure staff assistance. Participants would use the tool to identify patients at increased risk for disease (86%), record family history in the medical chart (84%), recommend preventive health behaviors (80%), and refer to genetics services (72%). Concerns about use of the tool included patient access, information accuracy, technical challenges, and the need for physician education on interpreting family history information.     

Adolescents-Family Connectedness: A First Cross-Cultural Research on Parenting and Psychological Adjustment of Children

Connectedness between children and their family is a major factor that distinguishes between collective and individualistic cultures. The Multigenerational Interconnectedness Scale, measuring adolescents-family connectedness was administered to adolescents in nine western and eastern countries. The findings show that connectedness in eastern countries was higher than that in western ones. Female adolescents were more connected to their families than males. Connectedness was higher among families with a higher economic level and where the parents had more education. Financial and functional connectedness was associated with adolescents’ better mental health, whereas emotional connectedness (or dependency) was associated with psychological disorders. The association between connectedness and psychological disorders was not the same across countries.     

Effects of alcohol abuse and familial alcoholism on physical health in men and women

Detoxified alcoholic men (n = 76) and women (n = 72) and nonalcoholic control men (n = 50) and women (n = 51) were given a structured interview that assessed five categories of physical health: medical history, alcohol-related disorders, trauma history, drug use history, and, for females, female-related disorders. Approximately half the subjects in each group were family history positive for alcoholism. Significant differences between alcoholics and controls were found for all five categories; family history effects were significant for four of the five categories, and sex differences were present in two categories. The results indicate that (a) alcoholics suffer pervasive physical health difficulties, (b) a family history of alcoholism is predictive of health problems in both alcoholics and controls, (c) the effects of alcohol abuse and family history of alcoholism on health appear to be independent and additive, and (d) women may be more "illness prone" than men and exhibit an increased vulnerability to the adverse effects of alcoholism.