Family Support Groups Research Articles

Information Needs of Mothers Regarding CommunicatingBRCA1/2Cancer Genetic Test Results to Their Children

Mothers who participate in genetic testing for hereditary breast/ovarian cancer risk must decide if, when, and how to ultimately share their BRCA1 and BRCA2 (BRCA1/2) test results with their minor-age children. One of the primary aides for mothers in making this decision is cancer genetic counseling. However, counseling is limited in how well it can educate mothers about such decisions without the availability of resources that are specific to family communication and genetic testing per se. In an effort to fill this gap and identify mothers most likely to benefit from such resources, surveys were conducted with 187 mothers undergoing BRCA1/2 testing who had children 8-21 years old. Data were collected weeks after genetic testing but prior to mothers' learning of their test results; quantitative assessments of informational resource needs (i.e., speaking with previous BRCA1/2 testing participants who are parents regarding their experiences, reading educational literature about options and what to expect, speaking with a family counselor, attending a family support group, and self-nominated other resources), testing motivations, decision making vigilance, and decisional conflict regarding communicating test results to children were included. Mothers' most-to-least frequently cited information resource needs were: literature (93.4%), family counseling (85.8%), prior participants (79.0%), support groups (53.9%), and other (28.9%; e.g., pediatricians and psychologists). Seventy-eight percent of mothers were interested in accessing three or more resources. In multivariate regression analyses, testing motivations (beta = 0.35, p = 0.03), decision-making vigilance (beta = 0.16, p = 0.00), and decisional conflict (beta = 0.10, p = 0.00) were associated with mothers' need level; mothers with a greater interest in testing to learn about their children's risks, those with more vigilant decision-making styles, and those with higher decisional conflict had the greatest need. In conjunction with enhanced genetic counseling focusing on family disclosure, educational literature, and psychosocial support may promote improved outcomes.

Cardio-facio-cutaneous and Noonan syndromes due to mutations in the RAS/MAPK signalling pathway: genotype–phenotype relationships and overlap with Costello syndrome

Cardio-facio-cutaneous (CFC) syndrome, Noonan syndrome (NS), and Costello syndrome (CS) are clinically related developmental disorders that have been recently linked to mutations in the RAS/MEK/ERK signalling pathway. This study was...

Support Groups for Children and Their Families in Pediatric Dermatology

Recent discussions regarding the burden of skin disease and patient-centered medicine highlight the profound effects skin disease can have on individuals, their families, and society as a whole. Local support groups, often connected to national patient advocacy groups, can be an invaluable resource for patients, and offer physicians the opportunity to learn more about patients' disease experiences while providing adjunctive therapy for conditions such as alopecia areata and vitiligo, for which medical options are often limited. We created a support group for children with alopecia areata and their parents as a model for other diseases such as vitiligo and epidermolysis bullosa. Herein we outline the steps involved in establishing a support group, including the many resources available for patient support, steps in the recruitment of patients, topics for discussion and goals for the group, and the logistics of running a meeting. Creating this family support group was a relatively straightforward and rewarding experience for us, and we hope that other pediatric dermatologists can utilize this model for their patients.

International Congress on Schizophrenia Research: Introduction

Although schizophrenia is considered one of the most serious psychiatric illnesses, at many times during the last century it has been relegated to the background. Focus on schizophrenia research, patient care, and connections with the family members of a person who suffers from schizophrenia began to change during the 1980s. Looking back, several events propelled this change, including the initiation of the Winter Workshop on Schizophrenia Research, the emergence of NAMI as an advocacy and support group for families with a schizophrenic member, the National Plan for Schizophrenia Research initiated by the National Institute of Mental Health (NIMH), and the International Congress on Schizophrenia Research (ICOSR). The ICOSR held its first meeting in 1987 in order to provide a venue for active investigators in schizophrenia research. Nearly every attendee provided a poster, paper, or plenary presentation with the result that the meeting was characterized by the establishment of new collaborations and a wish for the Congress to continue. Since that time, the goal of the first meeting has remained the focus of the ICOSR—a venue for the active investigator. An extension of this goal has been to attract a broad range of investigators from the fields of neuroscience, cognitive neuroscience, basic and clinical psychopharmacology, psychosocial interventions, and genetics. Thus, participation is broad ranging and stimulating. Past meetings have been characterized by the extension of results from basic science to the clinical testing arena as well as the investigation of basic underpininnings of reports from the fields of psychopharmacology and neuropsychology. At the time of the initiation of the ICOSR, there was consensus that too few young faculties had taken an interest in the field of schizophrenia research. Thus, the Young Investigator Program has been a part of all the ICOSR meetings. During the last 3 meetings, the Young Investigator Program has been supported by the NIMH, to whom the organizers express their gratitude. A recent assessment of the recipients of the Young Investigator Awards has revealed that numerous of today's leaders in the field, presenters at the ICOSR, and the mentors of recent Young Investigator Award winners have been initially supported by the Congress. Because schizophrenia is a worldwide illness, the original meeting attracted investigators from outside the United States. The organizers have been pleased to welcome an ever-increasing number of schizophrenia scientists from around the world. For example, at the meeting held in Savannah, Georgia, in 2005, the majority of attendees were from outside the United States and represented more than 45 different countries. The establishment of collaborations has, therefore, extended beyond the boundaries of contingent universities to international programs aimed at solving the problems facing people with schizophrenia. With the growth of interest in schizophrenia research and the ICOSR, has come the challenge of dissemination of the results presented at the meeting. The ICOSR has been pleased to collaborate with Schizophrenia Bulletin and Schizophrenia Research in the publication of abstracts from the meeting. These collaborations allowed for a useful compendium for attendees and distribution to subscribers and libraries around the world. As the International Congress on Schizophrenia Research has expanded from a group of 175 initial delegates to larger than 1500 active investigators, support for the meeting has needed to expand as well. The organizers wish to acknowledge several very instrumental supporters of the Congress, including the NIMH, the William K. Warren Foundation, several very faithful pharmaceutical companies for unrestricted grants to the Congress, the University of Maryland's MPRC, the University of Texas at Southwestern, and the University of Minnesota. The organizers recognize that the financial and administrative support of the groups mentioned above are only a part of the picture of the sustenance of the ICOSR. The most valuable resource for the Congress over the years has been the enthusiasm and careful preparation made by the active investigators attending the meeting. Their excitement for their work, their wish to share and stimulate their colleagues, and their participation with the Young Investigators makes the ICOSR a meeting that is always highly anticipated.

Narratives in Support Groups for Families of Patients in a Palliative Care Unit

Narratives in Support Groups for Families of Patients in a Palliative Care Unit

Initial Studies to Cure Maple Syrup Urine Disease (MSUD) in a Mouse Model

MSUD is a genetic disorder caused by deficiency of branched-chain α-keto acid dehydrogenase (BCKDH). Current unsatisfactory treatments require improved therapies to combat this disease. To develop novel therapies, we created murine models of MSUD (BMC Med. Gen. 2006, 7:33). In the current study, further characterization of the intermediate MSUD model revealed brain glutamate and glutamine levels reduced by 50% and GABA reduced by 20%. These findings are associated with neuropathology suggesting cerebral edema and are consistent with human MSUD. We then attempted to correct the disease phenotype using recombinant adeno-associated virus (rAAV) gene therapy. The rAAV vector was engineered to contain human BCKDH E2 subunit cDNA, a mouse albumin promoter to direct expression of E2 protein in the liver, and packaged into AAV2 and AAV8 serotypes. The viral vector (1011 v.g./kg) was administered by IP injection at 3 weeks of age. Some animals were also given a second injection at 7 weeks of age. Preliminary studies suggested increased BCKDH enzyme activity in AAV8 treated animals. Both AAV2 and AAV8 increased survival compared to saline treated mice but failed to normalize blood branched-chain amino acid levels. Based on these data we conclude that MSUD is a promising candidate for gene therapy. This work was supported by NIH grant DK057386, the Laverty Foundation, and the MSUD Family Support Group.

Depression Outcomes and Quality of Postdischarge Care of Elders Hospitalized for Major Depression

Depression Outcomes and Quality of Postdischarge Care of Elders Hospitalized for Major Depression

The influence of support groups on the family of risk newborns and on neonatal unit workers

To investigate the influence of support groups on the family of risk newborn infants and on neonatal unit workers. We used a qualitative approach, and as theoretical basis, family-centered care. The study was conducted in the neonatal unit of Hospital Prontolinda, in Pernambuco, Brazil. From January to June 2004, 25 meetings were held by the family support group. Data were collected through the observations of participants and through tape-recorded interviews with 13 mothers, six fathers, two grandmothers and 16 healthcare workers. The interviews were submitted to speech content analysis (thematic modality). The analysis revealed that the support group to the family of risk newborns provided parents and family members with information, emotional support and strengthening so that they could come to terms with the birth of their child and his/her admission to the neonatal unit, in addition to enabling parents to take care of the newborn infant. There was interpersonal growth in the interaction between parents, family members, and healthcare workers. The support group to the family of risk newborns uses an approach that is based on family-centered care. These principles allow restoring parental competence, helping healthcare workers to respect values and feelings of family members, and establishing a collaborative work between parents and healthcare workers in the neonatal unit.

Effects of a mutual support group for families of Chinese people with schizophrenia: 18-month follow-up

Family intervention in schizophrenia can reduce patient relapse and improve medication adherence, but few studies on this have involved a Chinese population. To examine the effects of a mutual support group for Chinese families of people with schizophrenia, compared with psychoeducation and standard care. Randomised controlled trial in Hong Kong with 96 families of out-patients with schizophrenia, of whom 32 received mutual support, 33 psychoeducation and 31 standard care. The psychoeducation group included patients in all the sessions, the mutual support group did not. Intervention was provided over 6 months, and patient- and family-related psychosocial outcomes were compared over an 18-month follow-up. Mutual support consistently produced greater improvement in patient and family functioning and caregiver burden over the intervention and follow-up periods, compared with the other two conditions. The number of readmissions did not decrease significantly, but their duration did. Mutual support for families of Chinese people with schizophrenia can substantially benefit family and patient functioning and caregiver burden.

Effectiveness of a mutual support group for families of patients with schizophrenia

This paper reports a study to examine the effectiveness of a 12-session mutual support group for Chinese families caring for a relative with schizophrenia compared with a psycho-educational group and routine family support services in Hong Kong. Schizophrenia is a disruptive and distressing illness for patients and their families. With the current trend of community care for mental illness, there is evidence that family intervention reduces patient relapse and re-hospitalization, satisfies the health needs of families and enhances their coping capabilities. A randomized controlled trial was conducted from May 2002 to June 2003 with 96 Chinese families of a relative with schizophrenia selected from two psychiatric outpatient clinics in Hong Kong. Families were randomly assigned to receive mutual support (n = 32), psycho-education (n = 33) or standard care only (n = 31). The interventions were delivered at outpatient clinics over a 6-month period. Pre- and post- (1 week and 6 months) testing took place and families' functioning, mental health service utilization, patients' level of functioning and duration of re-hospitalization were measured. At both post-test periods, family caregivers and patients in the mutual support group reported statistically significant improvements on family and patients' level of functioning, when compared with their counterparts in the psycho-education and standard care groups. The findings support the use of mutual support groups as an effective modality of family intervention in a Chinese population caring for a family member with schizophrenia to improve both family and patient functioning.

Relationship Between Perceived Family Support And Physical Activity Of Girls From 8th To 12th Grade

Others have shown that physical activity (PA) of girls declines as they progress from 9th to 12th grade. The study of PA correlates may help in planning PA interventions. PURPOSE To determine whether girls who perceive higher family support in the 8th grade participate in more PA and have higher selected correlates of PA in the 8th, 9th and 12th grades. METHODS A total of 421 girls (58.4% black, 13.6±0.6 years, BMI=24.0±5.5) completed questionnaires at each grade. Family support (FS) was measured by questions to assess whether family members (adults and other children) encouraged, participated with, provided transportation, watched participation, or told each girl that PA was good for her health. Responses ranged from 0 for no support to 4 for daily and the five questions were averaged to obtain a score. Girls with scores in the upper quartile were considered to have higher FS as compared to girls in the lower quartiles. Other measures obtained included PA self-efficacy (SE), attitudes (ATT), perceived behavioral control (PBC), and whether the girls had equipment for PA and sports. Girls were also asked whether they participated on a sports team, and they completed a 3 day PA recall (3DPAR). Odds ratios (OR) of girls in the high FS group also reporting 1 or more 30-min blocks of VPA (=6 METs), 2 or more 30-min blocks of MVPA (= 3 METs) or sports (school or outside of school) were calculated after controlling for race, BMI and school. T-tests were used to determine whether girls with higher FS had higher levels of ATT, SE, PBC and PA equipment than girls with lower FS. RESULTS Girls with higher FS in the 8th grade had higher 8th grade VPA (OR=1.94, p = .01), MVPA (OR= 2.50, p < .01), and sports participation (OR=2.63, p < .001); higher 9th grade MVPA (OR=1.89, p = .02), and sports participation (OR=1.98, p = .01); and higher 12th grade VPA (1.49, p = .09), and sports participation (OR=2.64, p < .001) than girls with lower FS. Girls with higher FS also had higher scores for SE, PBC and PA equipment at all three time points (p < .05) as compared with girls with lower FS. CONCLUSIONS Family support may help to prevent the decline in PA of high school girls. Support from family members may lessen the decline in PA independently from girl's SE, PBC and perceived PA equipment. The role of family should be carefully considered when planning interventions in high school girls. Supported by NIH Grant HL 057775

Relationship Between Perceived Family Support And Physical Activity Of Girls From 8th To 12th Grade

Others have shown that physical activity (PA) of girls declines as they progress from 9th to 12th grade. The study of PA correlates may help in planning PA interventions. PURPOSE To determine whether girls who perceive higher family support in the 8th grade participate in more PA and have higher selected correlates of PA in the 8th, 9th and 12th grades. METHODS A total of 421 girls (58.4% black, 13.6±0.6 years, BMI=24.0±5.5) completed questionnaires at each grade. Family support (FS) was measured by questions to assess whether family members (adults and other children) encouraged, participated with, provided transportation, watched participation, or told each girl that PA was good for her health. Responses ranged from 0 for no support to 4 for daily and the five questions were averaged to obtain a score. Girls with scores in the upper quartile were considered to have higher FS as compared to girls in the lower quartiles. Other measures obtained included PA self-efficacy (SE), attitudes (ATT), perceived behavioral control (PBC), and whether the girls had equipment for PA and sports. Girls were also asked whether they participated on a sports team, and they completed a 3 day PA recall (3DPAR). Odds ratios (OR) of girls in the high FS group also reporting 1 or more 30-min blocks of VPA (=6 METs), 2 or more 30-min blocks of MVPA (= 3 METs) or sports (school or outside of school) were calculated after controlling for race, BMI and school. T-tests were used to determine whether girls with higher FS had higher levels of ATT, SE, PBC and PA equipment than girls with lower FS. RESULTS Girls with higher FS in the 8th grade had higher 8th grade VPA (OR=1.94, p = .01), MVPA (OR= 2.50, p < .01), and sports participation (OR=2.63, p < .001); higher 9th grade MVPA (OR=1.89, p = .02), and sports participation (OR=1.98, p = .01); and higher 12th grade VPA (1.49, p = .09), and sports participation (OR=2.64, p < .001) than girls with lower FS. Girls with higher FS also had higher scores for SE, PBC and PA equipment at all three time points (p < .05) as compared with girls with lower FS. CONCLUSIONS Family support may help to prevent the decline in PA of high school girls. Support from family members may lessen the decline in PA independently from girl's SE, PBC and perceived PA equipment. The role of family should be carefully considered when planning interventions in high school girls. Supported by NIH Grant HL 057775

The gluten-free diet: How to provide effective education and resources

A strict gluten-free diet (GFD) for life is the only treatment for celiac disease (CD). This article reviews (1) the impact of the GFD on the quality of life of individuals with CD and their families; (2) the causes of poorly controlled CD; (3) the access to and source and quality of information provided by health professionals and other groups; (4) management strategies, including nutritional assessment and education guidelines; (5) a variety of resources available to individuals and health professionals; (6) innovative educational initiatives and partnerships; and (7) specific recommendations to address the increasing numbers of people with CD and the growing need for gluten-free (GF) foods and further education about CD and the GFD. Successful management of CD requires a team approach, including the person with CD and his or her family, physician, dietitian, and celiac support group; an individualized approach; understanding of quality of life issues; use of evidence-based, current information and resources; and regular follow-up to monitor compliance, nutritional status, and additional information and support. The physician must clearly communicate, with a positive attitude, an overview of CD and strongly emphasize the importance of a GFD for life. It is essential that the physician initiate an immediate referral to a dietitian with expertise in CD for nutritional assessment, diet education, meal planning, and assistance with the adaptation to the challenging new gluten-free lifestyle. Good dietary compliance will reduce the risk of further complications and associated health care costs and improve quality of life in patients with CD.

Family support group in psychosocial rehabilitation

Background:Support groups for families of persons with mental illness are emerging as significant components in psychosocial rehabilitation programmes.Aim:To ascertain the expectations of family members who attend family support group meetings and to find out the efficacy of such programmes.Methods:The data were collected from support group members using a semi-structured interview schedule. The study sample (n=20) was drawn from family members who attended the support group meetings regularly for a minimum period of 6 months. Data analysis was done using percentile.Results:Analysis of the data revealed that members attending the support group meetings expected to get more information about the illness, develop skills to cope with problems at home and learn skills to deal with the ill person. An important finding of the study was that the members developed a ‘feeling of togetherness’ as a result of being a member of a group with common aims.Conclusion:Participation in a support group meeting positively affects key variables in the participant's adaptation to mental illness in a relative.

Contesting the myth of the ‘wicked stepmother’: narrative analysis of an online stepfamily support group

This is the study of the narratives of a group of stepmothers who are members of an online blended family support group. Specifically, this study examines how the stepmothers utilize narratives to address the myth of the ‘wicked stepmother’ and the stigma associated with the stepmother role. History and implications of the ‘wicked stepmother’ myth are examined. Analysis of online narratives reveals the stepmothers' creation of a binary opposition—that of the biological mother as ‘wicked’ and the stepmother as ‘good’—in their attempt to deconstruct and contest this prevailing myth. Implications for narrative use among other social support groups are explored.

Social Work Intervention with White Collared Employees and Their Families

This investigation presents a framework for understanding and also to test the efficacy of Social Work intervention on the well being of the white collared employee (industrial employee) and his/her family. A comprehensive and intensive personal- family exploration was done to uncover the relatedness of seemingly disparate areas of the client’s lives. A total of 80 executives (industrial employees) served as subjects. A baseline assessment was done using structured, standardized interview-schedules/questionnaires. The results of the study can be enumerated as follows: After the Social Work intervention, the executives in occupational profile, there were significant changes in Role perception, overload, role conflict, low status and poor peer relations. In coping strategies there was significant improvement in sub-scales like problem solving and unproductive coping. Significant reduction was noticed in their proneness to heart disease, depression, inadequate mental mastery, and perceived ill health. There was significant improvement in their family group support, and in their expressiveness, achievement, orientation, active-recreational and organizational characteristics.

Expecting twins and more: support and information

This article discusses the antenatal education programme offered to women who attend a multiple pregnancy clinic (MPC) within a regional Hospital in the North West of England. The Liverpool Twins &amp; More Club (LT&amp;MC) was established in 1995 as a support group for women and families with a multiple pregnancy. Members of the LT&amp;MC carried out a small survey, using specially-designed semi-structured questionnaires, in 2001. The survey aimed to identify what information the LT&amp;MC members had found helpful throughout their pregnancy so that this could be shared with others in future classes. The survey was also an attempt to reassure newly pregnant women that the anxieties and experiences they have are shared by others and are a normal response to a multiple pregnancy. The main themes identified were: initial reaction, reaction of others, physical changes, antenatal information, sibling support, preparation for birth, coping with discharge, infant feeding, twin/triplet identity, bonding,amily/professional support and sleeping. The responses informs the content of the evening class and forms the basis of an information booklet, which is now given to all women attending the MPC.

The movement disorders of Coffin–Lowry syndrome

Coffin–Lowry syndrome (CLS) is an X-linked semi-dominant condition with learning difficulties and dysmorphism caused by mutations in the gene RSK2. Originally, epilepsy was reported as a feature. We and others have since described predominantly sound-startle induced drop attacks that have been labelled ‘cataplexy’, abnormal startle response and hyperekplexia. We sought to clarify why there should be controversy over the type of paroxysmal events. Review of the literature and our patients confirmed that each centre had studied only a small numbers of individuals (mean=2). The type of movement disorder varied both with age and between individuals. One individual might have more than one movement disorder. One of our adult patients had several types of movement disorder and epilepsy that merged seamlessly: there was true cataplexy triggered by telling a joke, something close to cataplexy (‘cataplexy’) triggered by sound-startle, a predominantly hypertonic reaction varying from hyperekplexia to a more prolonged tonic reaction resembling startle epilepsy, and true unprovoked epileptic seizures. In the large database of the Coffin–Lowry Syndrome Foundation family support group, 34 of 170 (20%) individuals with CLS and known age had ‘drop attacks’ and an additional 9 (5%) of these had additional epileptic seizures. The onset of such events was usually after age 5 years, prevalence peaking at 15–20 years (27%). Many became wheelchair bound as a result. This unique combination of more than one non-epileptic movement disorder and epilepsy deserves further semiological and genetic study both for the patients with CLS and for the wider implications.

Toward Triadic Communication

Like any industrialized nation, Japanese socioeconomic change has influenced the people's way of life. Since 1960, the number of psychosocially disturbed youngsters has steadily increased. Their symptoms vary according to their ages and circumstances, but the common denominator is “social withdrawal.” They withdraw from self, family, friends, and from becoming self-supporting. Parents feel disappointed and angry, but mostly guilty. Not knowing how to deal with these youngsters, the parents keep on overprotecting or underprotecting them. Consequently, meaningful communication in the family disappears. To help the parents, especially the mother, we run the family support group at Tokyo Youth Center. This paper is a report on our efforts to help the families.

Facilitators and barriers to support group participation for family caregivers of adults with mental illness.

Few low-income and minority caregivers of persons with serious mental illness participate in support groups. This study examined the facilitators and barriers to participation in support groups for families of persons with serious mental illness among lower socioeconomic African-American and Caucasian family caregivers. Three hypotheses were tested in a multivariate model which included need, enabling and predisposing variables utilizing a revised version of the Andersen model. Support group membership was hypothesized to be predicted by a higher perceived cost-benefit ratio (benefits minus costs) of group participation, fewer numbers of access barriers and higher levels of service use. A non-experimental cross-sectional design was used. Subjects were 145 lower socioeconomic status African-American and Caucasian family caregivers, 65 of whom were current support group members and 80 of whom had never participated in support groups. Findings confirmed that support group members reported a more favorable cost-benefit ratio and fewer access barriers than did non-support group members, controlling for other variables. Level of non-support group service use was not significantly different for support and non-support group members. Non-members' assessments of support group participation may be based on inaccurate perceptions and/or incomplete knowledge. Educational campaigns, sponsored by support groups and mental health authorities focusing on both perceptions about support groups as well as structural impediments to participation, such as access barriers, should be undertaken.