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PubMed2003

Genetics providers and the family covenant: connecting individuals with their families.

As genetic testing becomes more commonplace, medicine will likely face both family and individual demands for access to, and control of, test result information. Past research has emphasized confidentiality concerns of the individual and contrasted these claims with the "need to know" by others to avoid harm. These confidentiality concerns, based on individual self-interest, are challenged by a singularly important aspect of genetic testing-familial responsibility. As patients are often motivated to obtain genetic testing by an array of "other-directed" considerations toward their own family (such as love, fiduciary responsibility, gratitude, etc.), an accounting of these concerns is warranted. Understanding the relevance of family relationships and obligations facilitates a fuller informed consent for genetic testing. Genetic counselors and geneticists engaging in genetic counseling can account for the concerns of both individuals and their families using the family covenant-a helpful, innovative model to address proactively boundaries of privacy and information sharing within the family. This model focuses on two areas of discussion: (1) the demarcation of the boundaries of confidentiality; and (2) the definition of "family." The family covenant helps genetics providers consider what information "should" be confidential, and with respect to whom.

Cooperative Behavior↗

PubMed2006

How does the mode of inheritance of a genetic condition influence families? A study of guilt, blame, stigma, and understanding of inheritance and reproductive risks in families with X-linked and autosomal recessive diseases.

PURPOSE: While the mode of inheritance of a genetic condition has long been considered to have not only medical, but also psychosocial consequences for families, this supposition has never been tested. METHODS: We surveyed 112 members of 51 families (59% response) with chronic granulomatous disease to determine the influence of mode of inheritance on parents', siblings', and patients' (1) knowledge of inheritance and reproductive risk; (2) concern about risk to future family-members; (3) feelings of guilt and blame; and (4) feelings of stigmatization. Ninety-six members of 51 families (49% response) with Duchenne/Becker muscular dystrophy and spinal muscular atrophy types II/III were also studied. RESULTS: X-linked families had better understanding of inheritance (P < 0.001) and reproductive risks (P < 0.01). X-linked mothers worried more about risks to future generations; other autosomal-recessive family members were as worried. X-linked mothers were more likely to feel guilty (P < 0.01) and blame themselves (P < 0.001). X-linked fathers blamed their child's mother (P < 0.05) and X-linked mothers felt more blamed by the father (P < 0.01). X-linked family-members were more likely to consider being a carrier stigmatizing (P < 0.05). CONCLUSION: When providing genetic counseling, attention should be given to guilt and blame in X-linked families and understanding reproductive risks in autosomal recessive families.

Attitude↗

PubMed2004

Re-injecting spontaneity and balance in family life: parents' perspectives on recreation in families that include children with developmental disability.

METHODS: Grounded in the naturalistic paradigm, a mixed-method research design (survey questionnaire, n = 65; and interview, n = 16) was used to explore the nature and benefits of, and constraints to, family recreation in families that included children with developmental disability. Statistical analyses were conducted on the quantitative data, while key theme and constant comparative methods were used to analyse the qualitative data. RESULTS: These analyses revealed that family recreation most often involved small combinations of family members - usually mothers and their children - in physical recreation activities (e.g. swimming, walking, bike riding). Parents viewed these interactions as beneficial for enhancing family relationships and providing children, particularly those with a disability, opportunities for skill and self development within an accepting and supportive environment. Difficulties in coordinating family members schedules, finding activities to accommodate wide age and skill ranges, planning demands, and limitations in marketing and promotional materials were among the constraints most commonly identified in relation to the family as a whole and the children with developmental disability. Links to existing family and leisure research, family systems theory, and considerations for future research also are discussed.

Adaptation, Psychological↗

PubMed1977

Introducing medical students to family therapy using simulated family interviews.

Small groups of medical students are introduced to the subject of family therapy using a technique involving the simulation of family interviews. The students are called upon to enact a situation in which family members visit their general practitioner with a problem relating to one of the children, and the diffusion of this problem within the family is traced during the course of the simulation. Discussion is focused on the feelings evoked by the simulation, the psychodynamics of the simulated family and the quality of the relationship between the general practitioner and the family as it arises out of the interview. An effort is made to help the students to get in touch with some of their feelings towards disturbed families and to mobilize these feelings towards the effective management of the family's problems. By role playing the general practitioner, students can prepare themselves for their future professional roles in a situation which allows for feedback from colleagues and experimentation. At the same time, when family members are role-played, the process of identification and empathy with patients is enhanced. The technique is potentially stressful because of the unusual demands that it makes upon the students in terms of personal involvement, but the experience derived from successive groups of students over a 2 year period has been consistently rewarding, and most students have expressed an enthusiastic interest in the exercise.

Adult↗

PubMed1993

The effect of family counselling on the mental health of 10-11-year-old children in low- and high-risk families: a longitudinal approach.

This study investigated the effect of family counselling on the child's mental health in low- and high-risk families. The material consisted of 160 families with a baby born in 1975-76. First, the families were classified with a weighted risk index into low- and high-risk families. Eighty of the families attended a five-year-long family counselling program. The results of a ten year follow-up study showed that both the initial family risk and the counselling made a statistically significant contribution to the 10-11-year-old child's mental health. The counselling had a positive effect both in low- and high-risk families.

Child↗

PubMed1997

Children raised in fatherless families from infancy: family relationships and the socioemotional development of children of lesbian and single heterosexual mothers.

The aim of the study was to investigate family functioning and the psychological development of children raised in fatherless families from their first year of life. Thirty lesbian mother families and 42 families headed by a single heterosexual mother were compared with 41 two-parent heterosexual families using standardised interview and questionnaire measures of the quality of parenting and the socioemotional development of the child. The results show that children raised in fatherless families from infancy experienced greater warmth and interaction with their mother, and were more securely attached to her, although they perceived themselves to be less cognitively and physically competent than their peers from father-present families. No differences were identified between families headed by lesbian and single heterosexual mothers, except for greater mother-child interaction in lesbian mother families.

Child↗

PubMed1986

Families of Alzheimer's victims. Family support to the caregivers.

This study examined the instrumental and social-emotional support provided by families to the primary caregivers of Alzheimer's patients. It was anticipated that the more adequate the support provided by the family, the less sense of burden and the better the coping effectiveness of the caregiver. Ratings of instrumental assistance, social-emotional support, adequacy of support, and coping effectiveness were made by trained raters from transcribed interviews with 23 primary caregivers. Also, a second family member who was usually next closest of kin to the caregiver was interviewed in order to provide another perspective of the support the family provided. While the major caregiving tasks were performed by the primary caregiver, the types of assistance from family that seemed most appreciated were visits and having persons stay with the patient so that the caregiver could take a trip, rest, run errands, or get out of the house for social activities. The majority of caregivers felt a high degree of support from their families and reported low levels of emotional upset resulting from family support efforts. The most common family problems reported were lack of visits, disagreement over level of patient's mental and physical functioning, and disagreement over the type of care required. The data confirmed the hypothesis that family support was positively associated with the caregiver's coping effectiveness. In addition, caregivers who did not receive enough support were most burdened; however, the group receiving the greatest amount of support was the next most burdened, a finding which was unanticipated.(ABSTRACT TRUNCATED AT 250 WORDS)

Adaptation, Psychological↗

PubMed1977

The effects of family presence and brief family intervention on global outcome for hospitalized schizophrenic patients.

Virtually all modern inpatient psychiatric units operate on the assumptions that family presence, when the identified patient has schizophrenia, does affect outcome and that adding brief family intervention to the treatment prescription will enhance hospital and posthospital outcome. Often the family intervention is believed not adequate in terms of duration or frequency or quality (since trainees are the family therapists), given the standards of some experienced family clinicians. This report addresses these issues by comparing outcome measures for hospitalized patients with schizophrenia by (a) presence of a family and (b) amount and/or kind of family intervention. Most importantly, we wished to learn if global outcome would show change by virtue of family therapy (within the constraints imposed by the above limitations of family intervention).

Adolescent↗

PubMed1983

Sensory experience and family process: perceptual styles tend to run in but not necessarily run families.

The science of family systems has begun to develop concepts and methods for objectively assessing important characteristics of families. Thus we now have ways of measuring differences among families with respect to cohesiveness, flexibility, clarity of communication, and shared views of social reality. We know practically nothing, however, about the origins of these differences among families. One possibility is that the skills or personal attributes of one or more individual members influences the characteristics of the family as a whole. This paper explores the hypothesis that the perceptual styles of individual members--the ways they organize their experience of their personal stimulus world--influence the shared perceptions the family develops of the social world in which it lives. We explored relationships between nine measures of perceptual style and problem-solving measures of the family's shared perception of its social world. The findings showed many similarities among members of the same family on several measures of perceptual style. However, perceptual style had only a few relationships with family performance in the problem-solving task.

Adolescent↗

PubMed2004

Interest in and barriers to participation in multiple family groups among head and neck cancer survivors and their primary family caregivers.

This study examined interest in and barriers to participation in a multiple family group intervention (MFG) for adult cancer survivors and their family caregivers. The intervention was developed to assist families in coping with the persistent challenges of cancer diagnosis, treatment, and rehabilitation. Eighty eligible families having a member diagnosed and treated for cancers of the head and neck region completed a baseline quality of life survey consisting of standardized psychosocial measures, and then all patients and their families were invited to participate in a day-long multiple family group program. However, despite extensive recruitment efforts and accommodations to address anticipated barriers for nonparticipation, only 15 of the 80 (19%) eligible families agreed to attend the MFG workshop. Post-MFG, participating families reported high levels of program satisfaction and usefulness. These findings are discussed in the context of increasing the use of family-focused interventions in cancer care settings.

Adaptation, Psychological↗

PubMed2004

Clinical genetic counselling for familial cancers requires reliable data on familial cancer risks and general action plans.

Familial cancer clustering, without obvious heritability, poses a major challenge for current cancer risk assessment and management. Reliable determination of familial risks for cancer is important for clinical genetic counselling, but medically verified data on familial risks for many malignancies have been limited. However, the nationwide Swedish Family-Cancer Database allows a reliable characterisation of familial risk for all major neoplasms. Even though alert genetic counsellors and certainly clinical cancer geneticists will consider familial cancer clustering in their purview, the standard medical referral systems, which have already been shown to be poor in capturing and referring families at high risk for heritable cancers, are unlikely to ascertain familial aggregations of other cancers that are not known to belong to an inherited cancer syndrome. The data will be helpful in implementing evidence based guidelines for helping the general medical system to ascertain and refer even familial cancer clusters to cancer genetics professionals.

Adolescent↗

PubMed1985

Family management in the prevention of morbidity of schizophrenia: the adjustment of the family unit.

Changes in the functioning of family members were assessed during a randomly controlled study of community management of schizophrenia. Eighteen families who completed two years community management based upon behavioural family therapy were compared with 18 families who received patient oriented management with family support. Families receiving family management reported less disruption of activities, reductions in physical and mental health problems, and less subjective burden than those receiving the patient oriented approach. It is concluded that the benefits of family management extend beyond the reduction in clinical and social morbidity of the index patient to beneficial effects for the family as a whole.

Family Therapy↗

PubMed1999

Alcoholism treatment and the family: do family and individual treatments for alcoholic adults have preventive effects for children?

OBJECTIVE: This article identifies findings on alcoholism treatment and the family that may have implications for prevention of mental health and substance abuse problems in children. METHOD: We conducted a brief overview of research on family treatment for alcoholism and on family adjustment after individual treatment for the alcoholic. RESULTS: Behavioral couples therapy with alcoholics and remission after individual alcoholism treatment have been associated with improved family functioning in a variety of domains, including reduced family stressors; improved marital adjustment; reduced domestic violence and verbal conflict; reduced risk of separation and divorce; improvement in important family processes related to cohesion, conflict and caring; and reduced emotional distress in spouses. These family factors have been linked with child mental health and psychosocial functioning in more general child developmental and psychopathology studies. CONCLUSIONS: Research is needed to find out whether behavioral couples therapy or individual treatment for an alcoholic parent has beneficial and preventive effects for children, reducing their risk for mental health and substance abuse problems. Studies should determine whether there is a specific link between (a) improvements in family stressors, violence and verbal aggression, marital adjustment and stability and (b) child, adolescent and young adult outcomes for the children in these families.

Adolescent↗

PubMed2001

Assessing the value of the follow-through family project for students and families.

Although not a new teaching strategy, the follow-through family assignment is receiving renewed attention from maternity nursing faculty in light of shorter hospital stays and increased competition for clinical sites. The purpose of this evaluation study was to assess the project's value as a learning experience for students and to determine its benefits for participating families. The findings indicate that students enjoyed establishing therapeutic relationships with their families and helping child-bearing families answer health care questions. Students developed primary care skills, increased their self-confidence, and developed an appreciation of childbearing as a transition event for the family. Families appreciated students' educational support and individualized assistance. Families also enjoyed feeling that they had helped their student nurses learn. Overall, the benefits of the follow-through family project appear to outweigh the costs for both students and families.

Adult↗

PubMed2002

Attributable risks of familial cancer from the Family-Cancer Database.

Population attributable faction (PAF) shows the proportion of the disease that could be prevented if the cause could be removed. PAFs for most types of familial cancer have not been determined. We used the Swedish Family-Cancer Database on 10.2 million individuals and 688,537 parental and 116,741 offspring cancers to calculate familial risks, proportions of affected individuals, and familial PAFs for 28 neoplasms among 0-66-year-old offspring. The data were calculated by an exact proband status in the nuclear families. The familial risks for offspring cancer were increased at 23 of 28 sites from the same cancer in only the parent, at 17 sites from a sibling proband and at 12 sites from a parent and sibling proband. The highest PAFs by parent were for prostate (9.01%), breast (3.67%), and colorectal (5.15%) cancer. However, considering that in gender-specific cancers, the familial effect may originate from grandparents, the PAFs for prostate and breast cancer could be multiplied by 2. The PAFs for the sibling history of prostate, breast, and colorectal cancers were 1.55, 2.85, and 1.23% and for the parent and sibling history 0.99, 0.42, and 0.48%, respectively. Because of mutually exclusive proband definition, the PAFs were additive, giving a total PAF of 20.55% for prostate, 10.61% for breast, and 6.87% for colorectal cancer. The present PAF values give an estimate of the heritable single locus or additive effects for cancer in nuclear families. The data show that the familial PAF of prostate cancer was 20.55%, and breast cancer 10.61%, but for most other sites, it was between 1 and 3%.

Adolescent↗

PubMed2003

[Endothelial dysfunction in a family with familial combined hyperlipidemia].

Familial Combined Hyperlipidemia is the most frequent familial hyperlipidemia with a high risk a early manifestation of arteriosclerosis. Endothelial dysfunction is the first step in the development of arteriosclerosis. The aim of our investigation was to examine selected markers of endothelial dysfunction in hyperlipidemic members of families with familial combined hyperlipidemia and their normolipidemia first-line relatives and to compare them with healthy individuals. The study includes non-smoking members of the affected families (probands and first-line relatives), who have not suffered from clinical manifestations of arteriosclerosis and/or hypertension during the start of the study. The cohort was divided into hyperlipidemic individuals (N = 25) and normolipidemic individuals (N = 21). Both groups were compared with control groups of healthy individuals (two groups, N = 17 each), who were adjusted by age and sex. The following markers of endothelial dysfunction were examined: 1. ultrasound--flow mediated dilatation of brachial artery and 2. humoral--serum levels of von Willebrand factor, inhibitor of activator of plasminogen-1 and vasoadhesive molecules (vascular cell adhesion molecule-1, intercellular adhesion molecule-1). The members of families with familial combined hyperlipidemia displayed symptoms of endothelial dysfunction. In comparison with healthy controls the endothelial dysfunction was more expressed in hyperlipidemic individuals. They displayed a significantly lower flow-mediated dilatation of brachial artery (3.6 +/- 3.3% versus 6.6 +/- 2.8%, P < 0.01), higher levels of von Willebrand factor (152.8% +/- 79.1% versus 110.4% +/- 24.8%, P < 0.05), inhibitor of activator of plasminogen-1 (94.6 +/- 30.8 ng/ml versus 60.4 +/- 38.0 ng/ml, P < 0.01) and vasoadhesive molecules: vascular cell adhesion molecule-1 (927.0 +/- 167.7 ng/ml versus 814.7 +/- 171.1 ng/ml, P < 0.05), intercellular adhesion molecule-1 (601.7 +/- 89.5 ng/ml versus 544.8 +/- 59.8 ng/ml, P < 0.05). The normolipidemic individuals displayed only a significantly lower flow-mediated dilatation of brachial artery (5.6 +/- 2.6% versus 7.5 +/- 2.8%, P < 0.05) and higher levels of von Willebrand factor (136.8 +/- 40.32% versus 104.1 +/- 24.9%, P < 0.05). No significant difference was found in the levels of inhibitor of activator of plasminogen-1 and vasoadhesive molecules. The results indicated that members of families with familial combined hyperlipidemia represent a high-risk group from the standpoint of early manifestation of arteriosclerosis.

Adult↗

PubMed1992

Family violence in the Air Force: a look at offenders and the role of the family advocacy program.

Family violence exists throughout society and, unfortunately, also among military families. The Air Force's Family Advocacy Program is designed not only to treat victims, offenders, and families of abuse and neglect, but also to provide prevention services. Each Air Force base has a Family Advocacy Officer, who is a credentialed clinical social worker, charged with the duty of addressing spouse abuse and child maltreatment problems. To evaluate the effectiveness of current services, and to improve the quality of the services provided through the Family Advocacy Program, the Air Force is currently conducting a 4-year evaluation study. This research represents the largest study ever conducted on family violence, with either military or civilian offenders. This paper, based upon the first year of data collected at approximately one-third of all Air Force medical treatment facilities, reported on the descriptive characteristics of the substantiated cases of spouse abuse and child abuse/neglect, and the interventions which were being recommended to alleviate the abusive situations and to prevent future maltreatment. The results will guide policy and future manning and staffing decisions for the Air Force Family Advocacy Program, and serve to document the kinds of treatment strategies which work most effectively for which kinds of problems. Findings are expected to help improve the quality of services to victims, offenders, and families, and to do so for those who are civilians as well as for those who are in the military.(ABSTRACT TRUNCATED AT 250 WORDS)

Child↗

PubMed1990

Mentally retarded individuals in family care homes: relationships with the family-of-origin.

Family involvement with mentally retarded individuals living in family care was studied. A sample of 104 home providers completed a set of questionnaires focusing on family visitation, client trips home, and other forms of family contact. When combined predictors of family visitation were examined, the three variables contributing unique variance were the participation of family in placement, the provider's encouragement of involvement, and the living status of the father. Family involvement correlates of client and home provider characteristics, distance from the care home, and care home size were presented. Important support roles played by siblings, particularly for older residents, were discussed as were the impacts of family involvement on home provider stress. Descriptive information on family involvement across the lifespan was presented.

Adolescent↗