Michelle Araújo Moreira
Full Text Available Breastfeeding, sociocultural complex and multifaceted process, allows women of the same or of different generations within a group, parental experience and/or develop multiple meanings that can be modified or not depending on the social time in which they lived. Therefore, breastfeeding contributes to the interaction between family members, especially grandmothers, daughters and granddaughters when new generations appreciate lessons learned from the wisdom of a more experienced group. Therefore, it is a qualitative study, descriptive, exploratory-type literature review that had timeless selection for books, dissertations and theses, as series of articles from 1998 to 2008. The objective was to discuss the interface between family, generation and breastfeeding, underscoring the importance of aging and experience of older generations in the process of teaching and learning about breastfeeding to new generations. The literature review was done in the databases SciELO, LILACS and MEDLINE plus books, dissertations and theses, with the keywords: breastfeeding, family and generation. We identified 20 articles, 14 books, dissertations 4, 6 and 2 academic papers theses that were submitted to content analysis. In the analysis, it was noticed that the generations have a close relationship with each other, revealing that aging and maturity of the first generations contribute to greater acquisition of knowledge to be transmitted to younger generations of mothers who breastfeed. We conclude, believing that this study will look amplified, not only of health and related fields, but for those who want to analyze the possibilities of breastfeeding from intergenerational understanding it from the perspective of policymaker’s agents.
Furstenberg, Frank F.
Before we can determine the relevance of social capital to the sociology of family and kinship, we must fill the gaps in our theoretical knowledge. For example, we still do not know how couples, parents, children, and groups generate, accumulate, manage, and deploy social capital. Neither do we know the consequences of social capital for the…
This paper examines differences in work-family conflict and synergy among the four generational groups represented in the contemporary workforce: Generation Y Generation X, Baby Boomers, and Matures using data from the 2008 National Study of the Changing Workforce (n = 3,502). Significant generational differences were found for work-family conflict (work interfering with family and family interfering with work) but not for work-family synergy. Mental health and job pressure were the best pred...
Poon, Anna Fong-Yee; Schmid, Benjamin; Pires, Carlota
a familial AD patient carrying a L150P point mutation in PSEN1. Here we used CRISPR/Cas9 gene editing to correct for the single base pair mutation. This gene-corrected line, L150P-GC-hiPSC, serves as an isogenic control to the mutant line for future investigation of mechanisms and cellular phenotypes altered...
Winter, Robin O.
According to the American Board of Family Medicine, "The scope of family medicine encompasses all ages, both sexes, each organ system and every disease entity." What makes the seemingly daunting task of practicing family medicine possible is that family physicians learn to utilize similar clinical reasoning for all of their patients…
Nicholas J. Beutell
Full Text Available This paper examines differences in work-family conflict and synergy among the four generational groups represented in the contemporary workforce: Generation Y Generation X, Baby Boomers, and Matures using data from the 2008 National Study of the Changing Workforce (n = 3,502. Significant generational differences were found for work-family conflict (work interfering with family and family interfering with work but not for work-family synergy. Mental health and job pressure were the best predictors of work interfering with family conflict for each generational group. Work-family synergy presented a more complex picture. Work-family conflict and synergy were significantly related to job, marital, and life satisfaction. Implications and directions for future research are discussed.
Beutell, Nicholas J
This paper examines differences in work-family conflict and synergy among the four generational groups represented in the contemporary workforce: Generation Y Generation X, Baby Boomers, and Matures using data from the 2008 National Study of the Changing Workforce (n = 3,502). Significant generational differences were found for work-family conflict (work interfering with family and family interfering with work) but not for work-family synergy. Mental health and job pressure were the best predictors of work interfering with family conflict for each generational group. Work-family synergy presented a more complex picture. Work-family conflict and synergy were significantly related to job, marital, and life satisfaction. Implications and directions for future research are discussed.
Beutell, Nicholas J.
This paper examines differences in work-family conflict and synergy among the four generational groups represented in the contemporary workforce: Generation Y Generation X, Baby Boomers, and Matures using data from the 2008 National Study of the Changing Workforce (n = 3,502). Significant generational differences were found for work-family conflict (work interfering with family and family interfering with work) but not for work-family synergy. Mental health and job pressure were the best predictors of work interfering with family conflict for each generational group. Work-family synergy presented a more complex picture. Work-family conflict and synergy were significantly related to job, marital, and life satisfaction. Implications and directions for future research are discussed. PMID:23783221
Smith, Bert Kruger
This document addresses the dilemma faced by families with an aging or disabled member and the stress associated with the role of family caregiver. Emotions experienced by family caregivers, especially when the caregiver is an adult child caring for an elderly or frail parent, are discussed and feelings of desertion, dependence, and sibling…
Levinsohn, E. Mark; Shrimpton, Antony E.; Cady, Robert B.; Packard, David S.; Hootnick, David R.
This paper presents four generations of a family with radiographically demonstrated congenital vertical talus (CVT) in whom a HOXD10 gene mutation was identified. Some members of the family with this mutation exhibited cavo-varus foot deformity consistent with a Charcot-Marie-Tooth (CMT)-like disorder. Physical examination was performed on nearly all of the affected and unaffected family members. DNA was extracted from blood obtained from 14 subjects who showed radiographic and clinical features of CVT (two of whom also had CMT), from two subjects with features of CMT but not CVT, and from 20 related family members who were clinically normal. Radiographs show the appearance of uncorrected CVT in infancy, in childhood, and in adulthood. DNA analysis revealed a mutation in a HOXD10gene located on chromosome 2 in all of the affected but none of the unaffected family members. There is an autosomal-dominant-inherited mutation with complete penetrance which is found in all members of a pedigree with CVT, some of whom exhibit a CMT-like foot disorder. Radiologic findings vary depending on the severity of involvement, treatment provided and age of the patient. (orig.)
Levinsohn, E. Mark [Crouse Hospital, Department of Medical Imaging, Syracuse (United States); Shrimpton, Antony E. [SUNY Upstate Medical University, Department of Clinical Pathology, Syracuse (United States); Cady, Robert B. [SUNY Upstate Medical University, Department of Pediatrics, Syracuse (United States); Packard, David S. [SUNY Upstate Medical University, Department of Cell and Developmental Biology, Syracuse (United States); Hootnick, David R. [SUNY Upstate Medical University, Department of Pediatrics, Syracuse (United States); SUNY Upstate Medical University, Department of Cell and Developmental Biology, Syracuse (United States); SUNY Upstate Medical University, Department of Orthopedic Surgery, Syracuse (United States)
This paper presents four generations of a family with radiographically demonstrated congenital vertical talus (CVT) in whom a HOXD10 gene mutation was identified. Some members of the family with this mutation exhibited cavo-varus foot deformity consistent with a Charcot-Marie-Tooth (CMT)-like disorder. Physical examination was performed on nearly all of the affected and unaffected family members. DNA was extracted from blood obtained from 14 subjects who showed radiographic and clinical features of CVT (two of whom also had CMT), from two subjects with features of CMT but not CVT, and from 20 related family members who were clinically normal. Radiographs show the appearance of uncorrected CVT in infancy, in childhood, and in adulthood. DNA analysis revealed a mutation in a HOXD10gene located on chromosome 2 in all of the affected but none of the unaffected family members. There is an autosomal-dominant-inherited mutation with complete penetrance which is found in all members of a pedigree with CVT, some of whom exhibit a CMT-like foot disorder. Radiologic findings vary depending on the severity of involvement, treatment provided and age of the patient. (orig.)
Full Text Available In family firms, the business and the family are two arenas in which processes significantly overlap and influence management. The present paper investigates the overlap of the family system and the business through the use of culture. Adopting an idiographic approach and recognising the unique psychodynamic process of family business (FB, this study aims to identify the cultural patterns within the FB, starting from what families define as a family, b business and, c the generational change. Twenty-five family firms were considered during the generational change. The results show how and when this overlap takes shape pointing out how the role of family tradition can became a critical or success factor for the business.
To examine family functioning in the families of psychiatric patients. Families of psychiatric patients and nonclinical families were compared. There were 60 families in each group. The instrument included a semistructured interview of family functioning and the Chulalongkorn Family Inventory (CFI), a self-report questionnaire designed to assess the perception of one's family. From the assessment by semistructured interview, 83.3% of psychiatric families and 45.0% of nonclinical families were found to be dysfunctional in at least one dimension. The difference was statistically significant (p dysfunctional dimensions in the psychiatric families was significantly higher than in the nonclinical control group, 3.5 +/- 1.9 and 0.98 +/- 1.5 respectively, p families were significantly lower than the control group, reflecting poor family functioning. The dysfunctions were mostly in the following dimensions: problem-solving, communication, affective responsiveness, affective involvement, and behavior control. Psychiatric families faced more psychosocial stressors and the average number of stressors was higher than the control families, 88.3% vs. 56.7% and 4.2 +/- 2.7 vs. 1.3 +/- 1.47 stressors respectively, p < 0.0001. Family functioning of psychiatric patients was less healthy than the nonclinical control. The present study underlined the significance of family assessment and family intervention in the comprehensive care of psychiatric patients.
Huang, Xiao-Yan; Zhuang, Hong; Wu, Ji-Hong; Li, Jian-Kang; Hu, Fang-Yuan; Zheng, Yu; Tellier, Laurent Christian Asker M.; Zhang, Sheng-Hai; Gao, Feng-Juan; Zhang, Jian-Guo
Purpose Familial exudative vitreoretinopathy (FEVR) is a genetically and clinically heterogeneous disease, characterized by failure of vascular development of the peripheral retina. The symptoms of FEVR vary widely among patients in the same family, and even between the two eyes of a given patient. This study was designed to identify the genetic defect in a patient cohort of ten Chinese families with a definitive diagnosis of FEVR. Methods To identify the causative gene, next-generation sequencing (NGS)-based target capture sequencing was performed. Segregation analysis of the candidate variant was performed in additional family members by using Sanger sequencing and quantitative real-time PCR (QPCR). Results Of the cohort of ten FEVR families, six pathogenic variants were identified, including four novel and two known heterozygous mutations. Of the variants identified, four were missense variants, and two were novel heterozygous deletion mutations [LRP5, c.4053 DelC (p.Ile1351IlefsX88); TSPAN12, EX8Del]. The two novel heterozygous deletion mutations were not observed in the control subjects and could give rise to a relatively severe FEVR phenotype, which could be explained by the protein function prediction. Conclusions We identified two novel heterozygous deletion mutations [LRP5, c.4053 DelC (p.Ile1351IlefsX88); TSPAN12, EX8Del] using targeted NGS as a causative mutation for FEVR. These genetic deletion variations exhibit a severe form of FEVR, with tractional retinal detachments compared with other known point mutations. The data further enrich the mutation spectrum of FEVR and enhance our understanding of genotype–phenotype correlations to provide useful information for disease diagnosis, prognosis, and effective genetic counseling. PMID:28867931
Zhang, G; Yang, S-Z; He, L-F
This paper studies a family of n-scroll chaos generators using a modified Chua's circuit. A mathematic model of the generators is established, the relationship between equilibrium points and scrolls is also analyzed, and a general theorem for generation of n-scroll chaos attractors is given. Numerical simulation is illustrated, showing excellent agreement with our theoretical predictions
Poulsen, Shruti S.
Immigration is a process fraught with both challenges and opportunities for families. In particular, East Indian families with U.S.-born adolescents experience the challenges of bridging cultures across generational divides; they are perceived by others as confused, identity less, and conflicted or as American-Born, Confused Desis (ABCDs). This…
Merz, Eva-Maria; Ozeke-Kocabas, Ezgi; Oort, Frans J; Schuengel, Carlo
Although immigrants may be more dependent on their immediate family for support, they may also experience a wider generation-gap in values regarding intergenerational solidarity, because of processes of acculturation. Based on large scale survey data (N = 2,028), differences between first and second generation immigrants in values regarding intergenerational solidarity were examined among family members in the Netherlands with an immigration background from Turkey, Morocco, Suriname, and The Dutch Antilles. Using a multilevel analytic approach, effects of family and individual characteristics on values regarding intergenerational solidarity were tested, considering the perspectives of two generations. It was found that immigrants with Moroccan and Turkish backgrounds scored higher on values with respect to intergenerational family solidarity than immigrants stemming from Suriname and The Antilles. First generation immigrants placed higher values on family solidarity compared to second generation immigrants. Additionally, religious denomination was a significant predictor of higher values with respect to intergenerational family solidarity. Immigration and acculturation may create great strains in migrant families. Policies to support the fabric of intergenerational solidarity should consider ethnic and religious background and immigration history. Copyright 2009 APA, all rights reserved.
Franceschi, Roberto; Maines, Evelina; Fedrizzi, Michela; Piemontese, Maria Rosaria; De Bonis, Patrizia; Agarwal, Nivedita; Bellizzi, Maria; Di Palma, Annunziata
Cleidocranial dysplasia (CCD) is a rare autosomal dominant skeletal dysplasia characterized by hypoplastic clavicles, late closure of the fontanels, dental problems and other skeletal features. CCD is caused by mutations, deletions or duplications in runt-related transcription factor 2 (RUNX2), which encodes for a protein essential for osteoblast differentiation and chondrocyte maturation. We describe three familial cases of CCD, misdiagnosed as rickets over three generations. No mutations were detected on standard DNA sequencing of RUNX2, but a novel deletion was identified on quantitative polymerase chain reaction (qPCR) and multiple ligation-dependent probe amplification (MLPA). The present cases indicate that CCD could be misdiagnosed as rickets, leading to inappropriate treatment, and confirm that mutations in RUNX2 are not able to be identified on standard DNA sequencing in all CCD patients, but can be identified on qPCR and MLPA. © 2015 Japan Pediatric Society.
With the continuing shift of cancer care to community-based care the necessity to develop programs that enable the family to meet patients' needs for support and assistance is of paramount importance...
Thijs, Vincent; Grittner, Ulrike; Dichgans, Martin; Enzinger, Christian; Fazekas, Franz; Giese, Anne-Katrin; Kessler, Christof; Kolodny, Edwin; Kropp, Peter; Martus, Peter; Norrving, Bo; Ringelstein, Erich Bernd; Rothwell, Peter M; Schmidt, Reinhold; Tanislav, Christian; Tatlisumak, Turgut; von Sarnowski, Bettina; Rolfs, Arndt
Family history of stroke is an established risk factor for stroke. We evaluated whether family history of stroke predisposed to certain stroke subtypes and whether it differed by sex in young patients with stroke. We used data from the Stroke in Fabry Patients study, a large prospective, hospital-based, screening study for Fabry disease in young patients (aged stroke in whom cardiovascular risk factors and family history of stroke were obtained and detailed stroke subtyping was performed. A family history of stroke was present in 1578 of 4232 transient ischemic attack and ischemic stroke patients (37.3%). Female patients more often had a history of stroke in the maternal lineage (P=0.027) than in the paternal lineage. There was no association with stroke subtype according to Trial of Org 10172 in Acute Stroke Treatment nor with the presence of white matter disease on brain imaging. Patients with dissection less frequently reported a family history of stroke (30.4% versus 36.3%; P=0.018). Patients with a parental history of stroke more commonly had siblings with stroke (3.6% versus 2.6%; P=0.047). Although present in about a third of patients, a family history of stroke is not specifically related to stroke pathogenic subtypes in patients with young stroke. Young women with stroke more often report stroke in the maternal lineage. URL: http://www.clinicaltrials.gov. Unique identifier: NCT00414583. © 2015 American Heart Association, Inc.
Marickar, Y M Fazil; Salim, Abiya; Vijay, Adarsh
Genetic predisposition to urolithiasis is a much discussed topic. The objective of this paper is to identify the types of family members of proved urinary stone patients, who have a history of urinary stone formation. The study population consisted of 2,157 urinary stone patients interviewed in 2003-2007 in the urinary stone clinic. Family members with stone history were classified as group 1--first order single (one person in the immediate family-father, mother, siblings, or children), group 2--first order multiple (more than one member in the above group), group 3--second order single (one person in the blood relatives in family--grandparents, grandchildren, uncles, aunts, cousins, etc.) and group 4--second order multiple (more than one member in the above group). Of the 2,157 patients studied, 349 patients gave positive history of stone disease constituting 16.18%. Of these, 321 were males and 28 were females. Subdivision of the family members showed that 282 patients (80.80%) had single family member with stones and the rest 67 (19.20%) had multiple family members with history of stone disease. Group 1 which constituted one family member in the immediate family had 255 involvements (father: 88, mother: 16, brother: 135, sister: 2, son: 10, and daughter: 4); Group 2 with multiple members in the immediate family constituted 51 relatives; of these, father and brother combination was the most common with 35 occurrences. Group 3 with one person in the distant relatives in family namely grandparents, grand children, uncles, aunts, cousins, etc. constituted 27 occurrences and Group 4 with more than one member in the distant family constituted 16 occurrences. It is concluded that single family member involvement was more than multiple involvements. Males predominated. Stone occurrence was more in the immediate family members than distant relatives. Brothers formed the most common group to be involved with stone disease. Study of stone risk in the family members should
Technological improvements have resulted in increased discovery of new microRNAs (miRNAs) and refinement and enrichment of existing miRNA families. miRNA families are important because they suggest a common sequence or structure configuration in sets of genes that hint to a shared function. Exploratory tools to enhance investigation of characteristics of miRNA families and the functions of family-specific miRNA genes are lacking. We have developed, miRNAVISA, a user-friendly web-based tool that allows customized interrogation and comparisons of miRNA families for hypotheses generation, and comparison of per-species chromosomal distribution of miRNA genes in different families. This study illustrates hypothesis generation using miRNAVISA in seven species. Our results unveil a subclass of miRNAs that may be regulated by genomic imprinting, and also suggest that some miRNA families may be species-specific, as well as chromosome- and/or strand-specific.
Marija Petek Šter
Full Text Available Background. The number of elderly patients, i.e. people over 64 years, is growing. With longer life span the proportion of elderly people will be even higher. Elderly patients are a heterogeneous group of patients with considerable differences in health status, functional capacity, emotions, fears, beliefs and views.Health care of elderly patients in primary care is a responsibility of family doctors. One third of all family practice consultations are in the age group over 64. A consultation in the elderly is different from a consultation in younger patients. The consultation length in those patients is longer and the office visits of elderly are more frequent. If we want to deliver a quality care for the elderly, we have to care for them and manage their illness in psychological, physical, family and social context, which is a core stone of biopsychosocial model of medical practice. Besides medical knowledge and patient participation, all these elements make a foundation of the holistic approach. In elderly a special attention to their attitude towards aging, dying, loneliness and to the fears connected to those issues should be taken into account. Coordination with other services and with patients’ families is also necessary. Family physician is in the best position to recognise abuse, neglection or limitations in patient autonomy.We should be aiming to achieve a connection between the doctor and the patient through continuity between the doctor, the patient and his/her family. Good connection will make management of elderly patients more effective and the patients will accept and follow therapeutic plan.
Merz, Eva-Maria; Ozeke-Kocabas, Ezgi; Oort, Frans J.; Schuengel, Carlo
Although immigrants may be more dependent on their immediate family for support, they may also experience a wider generation-gap in values regarding intergenerational solidarity, because of processes of acculturation. Based on large scale survey data (N = 2,028), differences between first and second
Özdemir, Osman; Coşkun, Salih; Aktan Mutlu, Elif; Özdemir, Pınar Güzel; Atli, Abdullah; Yilmaz, Ekrem; Keskin, Sıddık
In this study, we aimed to better understand the genetic transmission of bipolar disorder by examining the family history of patients. Sixty-three patients with bipolar disorder and their families were included. The final sample comprised 156 bipolar patients and their family members. An inclusion criterion was the presence of bipolar disorder history in the family. The diagnosis of other family members was confirmed by analyzing their files, hospital records, and by calling them to the hospital. Sixty-five patients were women (41.6%) and 91 were men (58.3%) (ratio of men/women: 1.40). When analyzing the results in terms of the transition of disease from the mother's or father's side, similar results were obtained: 25 patients were from the mother's side and 25 patients were from the father's side in 63 cases. The results of our study support the fact that a significant relationship exists between the degree of kinship and the heritability of bipolar disorder and, furthermore, that the effect of the maternal and paternal sides is similar on the transmission of genetic susceptibility.
Landier, Wendy; Ahern, JoAnn; Barakat, Lamia P; Bhatia, Smita; Bingen, Kristin M; Bondurant, Patricia G; Cohn, Susan L; Dobrozsi, Sarah K; Haugen, Maureen; Herring, Ruth Anne; Hooke, Mary C; Martin, Melissa; Murphy, Kathryn; Newman, Amy R; Rodgers, Cheryl C; Ruccione, Kathleen S; Sullivan, Jeneane; Weiss, Marianne; Withycombe, Janice; Yasui, Lise; Hockenberry, Marilyn
There is a paucity of data to support evidence-based practices in the provision of patient/family education in the context of a new childhood cancer diagnosis. Since the majority of children with cancer are treated on pediatric oncology clinical trials, lack of effective patient/family education has the potential to negatively affect both patient and clinical trial outcomes. The Children's Oncology Group Nursing Discipline convened an interprofessional expert panel from within and beyond pediatric oncology to review available and emerging evidence and develop expert consensus recommendations regarding harmonization of patient/family education practices for newly diagnosed pediatric oncology patients across institutions. Five broad principles, with associated recommendations, were identified by the panel, including recognition that (1) in pediatric oncology, patient/family education is family-centered; (2) a diagnosis of childhood cancer is overwhelming and the family needs time to process the diagnosis and develop a plan for managing ongoing life demands before they can successfully learn to care for the child; (3) patient/family education should be an interprofessional endeavor with 3 key areas of focus: (a) diagnosis/treatment, (b) psychosocial coping, and (c) care of the child; (4) patient/family education should occur across the continuum of care; and (5) a supportive environment is necessary to optimize learning. Dissemination and implementation of these recommendations will set the stage for future studies that aim to develop evidence to inform best practices, and ultimately to establish the standard of care for effective patient/family education in pediatric oncology.
The classical restricted three-body problem is of fundamental importance because of its applications in astronomy and space navigation, and also as a simple model of a non-integrable Hamiltonian dynamical system. A central role is played by periodic orbits, of which many have been computed numerically. This is the second volume of an attempt to explain and organize the material through a systematic study of generating families, the limits of families of periodic orbits when the mass ratio of the two main bodies becomes vanishingly small. We use quantitative analysis in the vicinity of bifurcations of types 1 and 2. In most cases the junctions between branches can now be determined. A first-order approximation of families of periodic orbits in the vicinity of a bifurcation is also obtained. This book is intended for scientists and students interested in the restricted problem, in its applications to astronomy and space research, and in the theory of dynamical systems.
Maureen B Fagan DNP, MHA, FNP-BC
Full Text Available With the emerging trend of patient family–centered care in health care, it is essential that physicians be exposed to patient and family perspectives of care during medical education and training. Grand Rounds provides an ideal format for physicians to learn about patient family–centered care. At Brigham and Women’s Hospital, we sought to bring the voice of the patient to Patient Family–Centered Grand Rounds in order to expose clinicians to rich narratives describing the medical care received by patients/families and to ultimately change physician practice to reflect patient family–centered principles. We conducted a clinician survey and found promising results indicating that patient/family narratives can be effective at educating physicians about patient family–centered care.
Pilkauskas, Natasha V.
Using data from the Fragile Families and Child Wellbeing Study (N = 4,898), this study investigated how the share, correlates, transition patterns, and duration of 3-generation households vary by mother's relationship status at birth. Nine percent of married mothers, 17% of cohabiting mothers, and 45% of single mothers lived in a 3-generation…
Full Text Available Hereditary Ectodermal Dysplasia is an inherited disorder commonly involving skin, teeth, hair, and nails. We have observed ectodermal dysplasia (EDs in 11 individuals over two generations in one family. Smooth, dry, thin skin was seen in most affected individuals. All had fine, slow-growing scalp hair and body hair and some had sparse eyebrows and short eyelashes. Nearly all showed decrease in sweating. Severe teeth abnormalities were seen in all patients and fingernail abnormalities were not so severe but toenail abnormalities were seen in all patients. No other abnormalities were seen in affected individuals in this family. It is very rare to find such a large family having ectodermal dysplasia.
Miller, Stephen P
The multigenerational survival rate for family-owned businesses is not good. Lack of a shared vision for the family enterprise and weak next-generation leadership are often cited as two of the leading reasons for the failure of family firms to successfully transition from one generation of family ownership to the next. The climate of the business-owning family has also been suggested as important to the performance of the family enterprise. Despite these commonly held tenets, there is a lack of rigorous quantitative research that explores the relationships among these three factors. To address this gap, a quantitative study of 100 next-generation family firm leaders and 350 family and non-family leaders and employees with whom they work was conducted. The results demonstrate that a shared vision for the family business has a strong effect on the leadership effectiveness of next-generation family leaders and a moderate effect on the degree to which they are positively engaged with their work. The findings also show that two dimensions of family climate significantly influence the likelihood that a shared vision for the family firm has been created. Open communication in the family is positively related to the presence of a shared vision for the business. Intergenerational authority, which refers to a senior generation that exercises unquestioned authority and sets the rules, is negatively related to the presence of a shared vision. Surprisingly, a third dimension of family climate, cognitive cohesion, which includes shared values in the family, had no relationship with the degree to which there was a shared vision for the family business. The implications for family business owners is that they would be wise to spend as much time on fostering a positive family climate characterized by open communication as they do on creating and executing a successful business strategy if their goal is to pass the business from one generation of family owners to the next.
Miller, Stephen P.
The multigenerational survival rate for family-owned businesses is not good. Lack of a shared vision for the family enterprise and weak next-generation leadership are often cited as two of the leading reasons for the failure of family firms to successfully transition from one generation of family ownership to the next. The climate of the business-owning family has also been suggested as important to the performance of the family enterprise. Despite these commonly held tenets, there is a lack of rigorous quantitative research that explores the relationships among these three factors. To address this gap, a quantitative study of 100 next-generation family firm leaders and 350 family and non-family leaders and employees with whom they work was conducted. The results demonstrate that a shared vision for the family business has a strong effect on the leadership effectiveness of next-generation family leaders and a moderate effect on the degree to which they are positively engaged with their work. The findings also show that two dimensions of family climate significantly influence the likelihood that a shared vision for the family firm has been created. Open communication in the family is positively related to the presence of a shared vision for the business. Intergenerational authority, which refers to a senior generation that exercises unquestioned authority and sets the rules, is negatively related to the presence of a shared vision. Surprisingly, a third dimension of family climate, cognitive cohesion, which includes shared values in the family, had no relationship with the degree to which there was a shared vision for the family business. The implications for family business owners is that they would be wise to spend as much time on fostering a positive family climate characterized by open communication as they do on creating and executing a successful business strategy if their goal is to pass the business from one generation of family owners to the next. PMID
Stephen Phillip Miller
Full Text Available The multigenerational survival rate for family-owned businesses is not good. Lack of a shared vision for the family enterprise and weak next-generation leadership are often cited as two of the leading reasons for the failure of family firms to successfully transition from one generation of family ownership to the next. The climate of the business-owning family has also been suggested as important to the performance of the family enterprise. Despite these commonly held tenets, there is a lack of rigorous quantitative research that explores the relationships among these three factors. To address this gap, a quantitative study of 100 next-generation family firm leaders and 350 family and non-family leaders and employees with whom they work was conducted. The results demonstrate that a shared vision for the family business has a strong effect on the leadership effectiveness of next-generation family leaders and a moderate effect on the degree to which they are positively engaged with their work. The findings also show that two dimensions of family climate significantly influence the likelihood that a shared vision for the family firm has been created. Open communication in the family is positively related to the presence of a shared vision for the business. Intergenerational authority, which refers to a senior generation that exercises unquestioned authority and sets the rules, is negatively related to the presence of a shared vision. Surprisingly, a third dimension of family climate, cognitive cohesion, which includes shared values in the family, had no relationship with the degree to which there was a shared vision for the family business. The implications for family business owners is that they would be wise to spend as much time on fostering a positive family climate characterized by open communication as they do on creating and executing a successful business strategy if their goal is to pass the business from one generation of family owners to
Miller, Stephen P.
The multigenerational survival rate for family-owned businesses is not good. Lack of a shared vision for the family enterprise and weak next-generation leadership are often cited as two of the leading reasons for the failure of family firms to successfully transition from one generation of family ownership to the next. The climate of the business-owning family has also been suggested as important to the performance of the family enterprise. Despite these commonly held tenets, there is a la...
Michael-Tsabari, Nava; Lavee, Yoav
Despite growing research interest in family businesses, little is known about the characteristics of the families engaging in them. The present paper uses Olson's (Journal of Psychotherapy & the Family, 1988, 4(12), 7-49; Journal of Family Therapy, 2000, 22, 144-167) Circumplex Model of Marital and Family Systems to look at first-generation family firms. We describe existing typologies of family businesses and discuss similarities between the characteristics of first-generation family firms and the rigidly enmeshed family type described in the Circumplex Model. The Steinberg family business (Gibbon & Hadekel (1990) Steinberg: The breakup of a family empire. ON, Canada: MacMillan) serves to illustrate the difficulties of rigidly enmeshed first-generation family firms. Implications for understanding troubled family businesses are discussed together with guidelines for the assessment of a family business in crisis and for intervention: enhancing open communication; allowing for more flexible leadership style, roles, and rules; and maintaining a balance between togetherness and separateness. © 2012 American Association for Marriage and Family Therapy.
Background information: HIV infection may impact negatively on family relationship and vice versa. Members of the family of HIV positive patients may become frustrated because of the stigma of having a family member with HIV infection, and the burden of having to care for the patient. This can result into the family ...
Ruiz, Vanessa Y; Praska, Corinne E; Armstrong, Georgina; Kollmeyer, Thomas M; Yamada, Seiji; Decker, Paul A; Kosel, Matthew L; Eckel-Passow, Jeanette E; Consortium, The Gliogene; Lachance, Daniel H; Bainbridge, Matthew N; Melin, Beatrice S; Bondy, Melissa L; Jenkins, Robert B
Single-gene mutation syndromes account for some familial glioma (FG); however, they make up only a small fraction of glioma families. Gliomas can be classified into 3 major molecular subtypes based on IDH mutation and 1p/19q co-deletion. We hypothesized that the prevalence of molecular subtypes might differ in familial versus sporadic gliomas, and that tumors in the same family should have the same molecular subtype. Participants in the FG study (Gliogene) provided samples for germline DNA analysis. Formalin-fixed, paraffin-embedded (FFPE) tumor was obtained for a subset of FG cases, and DNA was extracted. We analyzed tissue from 75 families, including 10 families containing a second affected family member. Copy number variation (CNV) data was obtained using a first-generation Affymetrix molecular inversion probe (MIP) array. Samples from 62 of 75 (83%) FG cases could be classified into the 3 subtypes. The prevalence of the molecular subtypes was: 30 (48%) IDH-wild type, 21 (34%) IDH-mutant non-codeleted, and 11 (19%) IDH-mutant and 1p/19q-codeleted. This distribution of molecular subtypes was not statistically different from that of sporadic gliomas (p=0.54). Of 10 paired FG samples, molecular subtypes were concordant for 7 (κ=0.59): 3 IDH-mutant non-codeleted, 2 IDH-wild type, and 2 IDH-mutant and 1p/19q-codeleted gliomas. Our data suggest that within individual families, patients develop gliomas of the same molecular subtype. However, we did not observe differences in the prevalence of the molecular subtypes in FG compared with sporadic gliomas. These observations provide further insight about the distribution of molecular subtypes in FG. © The Author(s) 2017. Published by Oxford University Press on behalf of the Society for Neuro-Oncology. All rights reserved. For permissions, please e-mail: email@example.com
Kim, Geun Myun; Lim, Ji Young; Kim, Eun Joo; Kim, Sang Suk
We constructed a model explaining families' positive adaptation in chronic crisis situations such as the problematic behavior of elderly patients with dementia and attendant caregiving stress, based on the family resilience model. Our aim was to devise an adaptation model for families of elderly patients with dementia. A survey of problematic behavior in elderly patients with dementia, family stress, family resilience, and family adaptation was conducted with 292 consenting individuals. The collected data were analyzed using structural equation modeling. The communication process, family stress, and problematic behavior of elderly patients with dementia had direct and indirect effects on family adaptation, while belief system, organization pattern, and social support had indirect effects. Specifically, family stress and more severe problematic behavior by elderly patients with dementia negatively influenced family adaptation, while greater family resilience improved such adaptation. Interventions aiming to enhance family resilience, based on the results of this study, are required to help families with positive adaptation. Such family programs might involve practical support such as education on the characteristics of elderly persons with dementia and coping methods for their problematic behavior; forming self-help groups for families; revitalizing communication within families; and activating communication channels with experts.
Full Text Available This study aims to analyse the Ahlstrom annual reports. The content analysis contributes to family business corporate identity. According to the results family business corporate identity is based both on history and on the future. Human resource management, customer relationships, high quality, and also family ownership reflect corporate identity in large family corporations. Modern family business corporate identity is based on continuously developing the business concept and its core competency. Meeting the needs of customers and technical quality standards combined with upgrading and developing the business idea characterises family business corporate identity.
Angood, Peter; Dingman, Jennifer; Foley, Mary E; Ford, Dan; Martins, Becky; O'Regan, Patti; Salamendra, Arlene; Sheridan, Sue; Denham, Charles R
The objective of this article was to provide a guide to health care providers on patient and family involvement in health care. This article evaluated the latest published studies for patient and family involvement and reexamined the objectives, the requirements for achieving these objectives, and the evidence of how to involve patients and families. Critical components for patient safety include changing the organizational culture; including patients and families on teams; listening to patients and families; incorporating their input into leadership structures and systems; providing full detail about treatment, procedures, and medication adverse effects; involving them on patient safety and performance improvement committees; and disclosing medical errors. The conclusion of this article is that, for the future, patient and family involvement starts with educating patients and families and ends with listening to them and taking them seriously. If patient and family input is emphatically built into systems of performance improvement, and if patients and families are taken seriously and are respected for their valuable perspectives about how care can be improved, then organizations can improve at improving. Resources in health care are in short supply, yet the resources of patient and family help and time are almost limitless, are ready to be tapped, and can have a huge impact on improving the reliability and overall success for any health care organization.
61.93% of the variance, describing the theoretical dimensions of the generation of ... the core values, family business philosophies and a family vision. ... formulation, is the development of the family business continuity plan. This plan ... In the study of family businesses, one of the first tasks is to determine what is meant by ...
Collier, Aileen; Sorensen, Ros; Iedema, Rick
The aim of this study was to investigate patients' and families' perspectives of safety and quality in the setting of a life-limiting illness. Data reported here were generated from a qualitative study using video-reflexive ethnographic methodology. Data were collected over 18 months and generated through participant observation, shadowing of clinicians, field-interviews and semi-structured interviews with patients and families. The study was conducted at two hospital sites in Sydney, Australia and in patients' homes. Patients with an advanced life-limiting illness (n = 29) ranging in age between 27 and 89 years and family members (n = 5) participated in the study. Patient safety remains important to dying patients and families. For dying people, iatrogenic harm is not regarded as 'one off' incidents. Rather, harm is experienced as a result of an unfolding series of negative events. Critically, iatrogenic harm is emotional, social and spiritual and not solely technical-clinical misadventure and is inextricably linked with feeling unsafe. Thus, patient safety extends beyond narrowly defined technical-clinical parameters to include interpersonal safety. Current approaches to patient safety do not address fully the needs of dying patients and their families. Patients and their families regard poor communication with and by health professionals to be harmful in and of itself. © The Author 2015. Published by Oxford University Press in association with the International Society for Quality in Health Care; all rights reserved.
Jessica D. Zurcher
Full Text Available Disney animated films continue to serve as an influential form of media that shapes children’s development of beliefs about the world surrounding them, including the construct of the family. However, a census analysis as to how Disney animated films represent depictions of families has yet to be conducted. To fill this gap, we assessed the qualities of family demographics, structure, and function in a census analysis of 85 Disney animated films from the years 1937–2018. Results indicated that single parent families (41.3% was the most predominantly represented family structure, followed by nuclear (25% and guardian (19.2%. We also observed that the first depiction of a non-Caucasian family was presented in the 1990s, with a growing number of ethnically diverse families since that time. However, minimal interactions between families of differing ethnicities are noted. Overall, over 75% of all Disney animated films depicted warm and supportive familial interactions, with 78.8% of the films illustrating a positive relationship between the protagonist and his/her family. Analysis and implications are offered for parents and educators who wish to further understand the content Disney animated films offer in depicting families.
Nissen, Kathrine Grovn; Trevino, Kelly; Lange, Theis
CONTEXT: Caring for a family member with advanced cancer strains family caregivers. Classification of family types has been shown to identify patients at risk of poor psychosocial function. However, little is known about how family relationships affect caregiver psychosocial function. OBJECTIVES......: To investigate family types identified by a cluster analysis and to examine the reproducibility of cluster analyses. We also sought to examine the relationship between family types and caregivers' psychosocial function. METHODS: Data from 622 caregivers of advanced cancer patients (part of the Coping with Cancer...... Study) were analyzed using Gaussian Mixture Modeling as the primary method to identify family types based on the Family Relationship Index questionnaire. We then examined the relationship between family type and caregiver quality of life (Medical Outcome Survey Short Form), social support (Interpersonal...
Stepień, Adam; Staszewski, Jacek; Domzał, Teofan M; Tomczykiewicz, Kazimierz; Skrobowska, Ewa; Durka-Kesy, Marta
Narcolepsy is characterized by chronic excessive daytime sleepiness with episodic sleep attacks. There are several associated symptoms of narcolepsy: cataplexy (bilateral muscle weakness without loss of consciousness provoked by an emotional trigger, e.g. laughter), sleep paralysis and hypnagogic-hypnopompic hallucinations. Most cases are sporadic; familial narcolepsy contributes to only 1-5% of all cases. While most cases of narcolepsy are idiopathic and are not associated with clinical or radiographic evidence of brain pathology, symptomatic or secondary narcolepsy may occur occasionally in association with lesions caused by tumours, demyelination or strokes of the diencephalon, midbrain, and pons. There are some examples of non-specific brainstem lesions found in magnetic resonance imaging (MRI) in patients with idiopathic narcolepsy. The authors present eleven patients from a five-generation family with many members who suffer from episodic excessive daytime sleepiness. Narcolepsy was diagnosed in 9 patients. Sleepiness was frequently associated with cataplexy, hypnagogic-hypnopompic hallucinations and sleep paralysis. Improvement in their clinical state was observed during the treatment with modafinil. All probands had MRI of the brain, routine blood tests, EEG, polysomnography, examination of the level of hypocretin in cerebrospinal fluid and evaluation by means of Epworth and Stanford Sleepiness Scales. In 9 patients with narcolepsy, decreased thickness of the substantia nigra was found and in six of them degenerative lesions in the pontine substantia nigra were also noticed. The significance of these changes remains unclear. No data have been published until now concerning the presence of any brain lesions in patients with familial narcolepsy.
Nissen, Kathrine G; Trevino, Kelly; Lange, Theis; Prigerson, Holly G
Caring for a family member with advanced cancer strains family caregivers. Classification of family types has been shown to identify patients at risk of poor psychosocial function. However, little is known about how family relationships affect caregiver psychosocial function. To investigate family types identified by a cluster analysis and to examine the reproducibility of cluster analyses. We also sought to examine the relationship between family types and caregivers' psychosocial function. Data from 622 caregivers of advanced cancer patients (part of the Coping with Cancer Study) were analyzed using Gaussian Mixture Modeling as the primary method to identify family types based on the Family Relationship Index questionnaire. We then examined the relationship between family type and caregiver quality of life (Medical Outcome Survey Short Form), social support (Interpersonal Support Evaluation List), and perceived caregiver burden (Caregiving Burden Scale). Three family types emerged: low-expressive, detached, and supportive. Analyses of variance with post hoc comparisons showed that caregivers of detached and low-expressive family types experienced lower levels of quality of life and perceived social support in comparison to supportive family types. The study identified supportive, low-expressive, and detached family types among caregivers of advanced cancer patients. The supportive family type was associated with the best outcomes and detached with the worst. These findings indicate that family function is related to psychosocial function of caregivers of advanced cancer patients. Therefore, paying attention to family support and family members' ability to share feelings and manage conflicts may serve as an important tool to improve psychosocial function in families affected by cancer. Copyright © 2016 American Academy of Hospice and Palliative Medicine. All rights reserved.
Frohlich, J; Godolphin, W J; Reeve, C E; Evelyn, K A
A 16-year-old male (S.F.) and his 21-year-old sister (D.H.) from a large family of Italian and Swedish descent had virtually identical lipoprotein pattern and complete absence of LCAT activity. Both had typical corneal opacities and mild anemia with target cells. S.F., but not D.H., presented with proteinuria, which has increased over three years of follow-up. His kidney biopsy revealed lipid deposits in the glomerular basement membrane. Ten relatives in 4 generations had normal LCAT activity and/or lipoprotein pattern. The patients and their relatives had haptoglobin type 2. Factors that might influence the different clinical presentation in our patients (previous renal disease, diet, abnormal lipoproteins), prognosis, and treatment (diet, enzyme replacement, cholestyramine) are discussed.
Li Rungen; Jiao Xinqiang; Chen Zhilie; Lu Jun; Gao Xin
Objective: To improve the recognition and diagnosis of pseudohypoparathyroidism (PhP). Methods: Six subjects with PhP of 4 generations in one family were investigated and studied. There were 4 males (including 2 deaths) and 2 females. The age of 4 surviving patients was from 8 to 55 years. All cases were proved by clinical biochemistry tests. Plain film of hands and head CT scans were performed in 2 selected patients. Results: The somatotype of Albright hereditary osteodystrophy (AHO) and short fingers and toes were found in all cases. Radiologic features were as follows: (1) short metacarpals and phalanges. (2) skull thickening and symmetrical calcification of basal ganglia. Conclusion: The diagnosis of PHP can be established by close combination of radiologic findings and clinical manifestations
Wouters, Roel H P; Bijlsma, Rhodé M; Ausems, Margreet G E M; van Delden, Johannes J M; Voest, Emile E; Bredenoord, Annelien L
Ever since genetic testing is possible for specific mutations, ethical debate has sparked on the question of whether professionals have a duty to warn not only patients but also their relatives that might be at risk for hereditary diseases. As next-generation sequencing (NGS) swiftly finds its way into clinical practice, the question who is responsible for conveying unsolicited findings to family members becomes increasingly urgent. Traditionally, there is a strong emphasis on the duties of the professional in this debate. But what is the role of the patient and her family? In this article, we discuss the question of whose duty it is to convey relevant genetic risk information concerning hereditary diseases that can be cured or prevented to the relatives of patients undergoing NGS. We argue in favor of a shared responsibility for professionals and patients and present a strategy that reconciles these roles: a moral accountability nudge. Incorporated into informed consent and counseling services such as letters and online tools, this nudge aims to create awareness on specific patient responsibilities. Commitment of all parties is needed to ensure adequate dissemination of results in the NGS era. © 2016 WILEY PERIODICALS, INC.
Koutra, Katerina; Triliva, Sofia; Roumeliotaki, Theano; Stefanakis, Zacharias; Basta, Maria; Lionis, Christos; Vgontzas, Alexandros N
The present study aimed to investigate possible differences in family environment among patients experiencing their First Episode of Psychosis (FEP), chronic patients and controls. Family cohesion and flexibility (FACES-IV) and psychological distress (GHQ-28) were evaluated in families of 50 FEP and 50 chronic patients, as well as 50 controls, whereas expressed emotion (FQ) and family burden (FBS) were assessed in families of FEP and chronic patients. Multivariable linear regression analysis, adjusted for confounders, indicated impaired cohesion and flexibility for families of FEP patients compared to controls, and lower scores for families of chronic patients compared to those of FEP patients. Caregivers of chronic patients scored significantly higher in criticism, and reported higher burden and psychological distress than those of FEP patients. Our findings suggest that unbalanced levels of cohesion and flexibility, high criticism and burden appeared to be the outcome of psychosis and not risk factors triggering the onset of the illness. Furthermore, emotional over-involvement both in terms of positive (i.e. concern) and negative behaviors (i.e. overprotection) is prevalent in Greek families. Psychoeducational interventions from the early stages of the illness should be considered to promote caregivers' awareness regarding the patients' illness, which in turn, may ameliorate dysfunctional family interactions. Copyright © 2014 Elsevier Ireland Ltd. All rights reserved.
Freeman, J Christopher; Chuck, Roy S
With baby boomers aging, and despite a growing global population, there is a decreasing number of potential laser vision correction patients. Some believe that the worldwide economic downturn of these times will limit the number of potential patients as well. This article highlights looking to an alternative segment of the population to identify potential laser vision correction patients and the limitations of reaching this group. The group known as generation Y contains a large number of individuals who may be candidates for laser vision correction. Traditional marketing efforts present challenges in reaching this particular population segment. Many individuals in this group are already patients of eye doctors for contact lenses and glasses and can be reached by these eye doctors to address candidacy and education of laser vision correction. Generation Y represents a large population segment that contains technology-embracing individuals who, although hard to reach with traditional marketing efforts, may be reached by fellow eye doctors already managing these patients. There are many in this age group who would be good laser vision correction candidates.
Dandavate, A. L.; Sarje, S. H.
In this paper, an attempt has been made to develop concepts for patient transferring tasks. The concept generation process of patient transferring device (PTD), which includes interviews of the customers, interpretation of the needs, organizing the needs into a hierarchy, establishing relative importance of the needs, establishing target specifications, and conceptualization has been discussed in this paper. The authors conducted the interviews of customers at Mobilink NGO, St. John's Hospital, Bangalore in order to know the needs and wants for the PTD. AHP technique was used for establishing and evaluating relative importance of needs, and based on the importance of the customer needs, concepts were developed through brainstorming.
Hebblethwaite, Shannon; Norris, Joan
The purpose of this study was to understand the expression of generativity among grandparents and their adult grandchildren through their experiences of family leisure. Fourteen dyads of grandparents and adult grandchildren were interviewed about their experience of family leisure. The findings illustrate the important role that family leisure…
Nearly half of the nation's families with young children struggle to make ends meet. A new KIDS COUNT policy report makes the case for creating opportunity for families by addressing the needs of parents and their children simultaneously. "Creating Opportunity for Families: A Two-Generation Approach" describes a new approach to reducing…
Bezcioglu-Goktolga, Irem; Yagmur, Kutlay
This study investigated the family language policy of second-generation Turkish immigrant families in the Netherlands by exploring their language ideologies, practices, and management strategies. Using an ethnographic approach, data were collected through a set of observations and interviews with 20 families. Transcriptions of interviews and memos…
McGrath, P.; Fitch, M.I. [Toronto-Sunnybrook Regional Cancer Centre, Toronto, Ontario (Canada)
This report documents the findings of a survey of patients who received radioactive iodine therapy and their family members. The main objective of the survey was to gain an understanding of the experience of receiving radioactive iodine from the patient and family's perspective. The data from this study helped to inform the ARCP and GMA as they developed AC-9 - Principles of the management of radionuclide therapies. A survey was distributed to 700 patients and family members through physicians at 8 sites across Canada. Locations included: Newfoundland, Nova Scotia, Ontario (2 sites), Quebec (2 sites), Manitoba and British Columbia. A total of 190 patients and 140 family members returned completed surveys. Data was analyzed separately for individuals treated as inpatients and those treated as outpatients. The results of the survey provided a perspective from patients and families about their experiences regarding radioactive iodine therapy. The data indicate variation in patients' and family members' perspectives about how precautions are to be implemented. Both patients and family members expressed the desire for more information regarding many aspects of the treatment experience. The results have implications for the development of patient information, continuing education (in particular in the areas of precaution), the provision of access to supportive and counselling services, and the importance of looking at the individual situations of patients and their families. (author)
McGrath, P.; Fitch, M.I.
This report documents the findings of a survey of patients who received radioactive iodine therapy and their family members. The main objective of the survey was to gain an understanding of the experience of receiving radioactive iodine from the patient and family's perspective. The data from this study helped to inform the ARCP and GMA as they developed AC-9 - Principles of the management of radionuclide therapies. A survey was distributed to 700 patients and family members through physicians at 8 sites across Canada. Locations included: Newfoundland, Nova Scotia, Ontario (2 sites), Quebec (2 sites), Manitoba and British Columbia. A total of 190 patients and 140 family members returned completed surveys. Data was analyzed separately for individuals treated as inpatients and those treated as outpatients. The results of the survey provided a perspective from patients and families about their experiences regarding radioactive iodine therapy. The data indicate variation in patients' and family members' perspectives about how precautions are to be implemented. Both patients and family members expressed the desire for more information regarding many aspects of the treatment experience. The results have implications for the development of patient information, continuing education (in particular in the areas of precaution), the provision of access to supportive and counselling services, and the importance of looking at the individual situations of patients and their families. (author)
Summary Author s name: Yasmine Shakari Title: Family, Socialization and Migration in Norwegian-Pakistani Families: A Study of the First and the Second Generation Supervisor: Øystein Gullvåg Holter Co-supervisor: Thomas Walle Aim of study: This thesis seeks to obtain knowledge about 1) how the first generation of Norwegian-Pakistanis were raised in Pakistan in terms of socialization of gender roles, 2) how the second generation of Norwegian-Pakistanis have been raised here in Norway, and 3) if...
Family members note the choices and behaviour of each other, Alice Grønhøj explores which generation is leading environmentally-minded domestic behaviour......Family members note the choices and behaviour of each other, Alice Grønhøj explores which generation is leading environmentally-minded domestic behaviour...
Ho, C. Y. Cherri
The purpose of this study is to examine intergenerational learning behaviour within ten Hong Kong families between Generation X parents and their Generation Y children. It tries to investigate intergenerational knowledge exchange, identify the characteristics of learning behaviour and culture in their "learning families". A narrative…
Reza Johari-Fard; Farzad Goli; Amirreza Boroumand
Migraine is a disorder that has debilitating pain, and affects all aspects of life, including the academic, social, and family life of patients. In addition, studies show the effects of migraine on patient's relationships with family members such as spouse, children, and other family members. In addition to physical pain, migraines are tied to significant psychological and economic costs. Migraineurs tend to have high levels of depression and anxiety, and migraine headaches have a profoundly ...
Yamashita, Ryoko; Arao, Harue; Takao, Ayumi; Masutani, Eiko; Morita, Tatsuya; Shima, Yasuo; Kizawa, Yoshiyuki; Tsuneto, Satoru; Aoyama, Maho; Miyashita, Mitsunori
Unfinished business often causes psychological issues after bereavement. Providing care for families of terminally ill patients with cancer to prevent unfinished business is important. To clarify the prevalence and types of unfinished business in families of end-of-life patients with cancer admitted to palliative care units (PCUs), explore depression and grief associated with unfinished business, and explore the factors affecting unfinished business. We conducted a cross-sectional, anonymous, self-report questionnaire survey with 967 bereaved families of patients with cancer admitted to PCUs. The questionnaire assessed the presence or the absence of unfinished business, content of unfinished business, depression, grief, process of preparedness, condition of the family and patient, and the degree of involvement of health care professionals. Questionnaires were sent to 967 families, and 73.0% responded. In total, 26.0% of families had some unfinished business, with improvement of the patient-family relationship being a common type of unfinished business. Families with unfinished business had significantly higher depression and grief scores after bereavement compared with those without. Factors that influenced the presence or the absence of unfinished business were preparedness for the patient's death (P = 0.001), discussion between the patient and family about the disease trajectory and way to spend daily life (P business. Health care professionals should coordinate the appropriate timing for what the family wishes to do, with consideration of family dynamics, including the family's preparedness, communication pattern, and relationships. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Kamal K Verma
Full Text Available Background: Dissociative disorder is a stress-related disorder usually present in adolescent and younger age group. It is also accompanied with significant impairment in activity of daily living and family relationship. Family environment plays important role in initiation and maintenance of symptoms and this put significant burden on family. Aim and Objective: To study presence of stressor, family environment, and assessment of family burden in dissociative disorder patients. Material and Method: This was a cross-sectional observational study in which 100 dissociatives disorder patients were included after fulfilling inclusion criteria from both inpatients and outpatient department of psychiatry. Results: In our study major part of the sample were women 60 (60%, among them most of were housewife and educated up to primary school. According to a stressor, 63 (63% patients had family stress/problem and out of them, 35 (58.4 were women. Seventy-four (74% patients had dissociative convulsion and out of them, 45 (75% were women. The dissociative disorder patients cause a considerable degree of burden over other family members in both men and women. There is a significant difference found in the family environment in term of personal growth dimension, relationship dimension in both men and women. Conclusion: Present study concludes that dissociative disorder patients cause a considerable degree of burden over other family members in term of leisure, physical, mental, financial, and routines family interrelationship domains. The family environment in term of personal growth dimension, relationship dimension has a casual effect on symptoms of dissociative disorder patients.
Full Text Available Introduction. The role of family as a preventive, promotive, and curative agent is well documented in mental health studies. However, few attempts have been made to engineer the positive family mechanisms in enhancing psychiatric patients' role performance. Methods. This study is an endeavor to demarcate the effect of family education on social functioning of 170 schizophrenics and 174 patients with mood disorders. Solomon's four group design allowed patients from each category to be assigned into four groups. Key family members from experimental groups participated in a one day monthly programmer over a period of six months. Attitude towards mental illness, family environment and skills in management of patient's verbal and non-verbal behaviors as well as patient's adjustment ability within the family, community and work place constituted the focus of this study. While applying batteries of test, data pertaining to the aforementioned characteristics were obtained from the subjects 6 and 18 months after intervention which were subsequently compared with the baseline data. Findings. Comparing the baseline data with the data pertaining to other phases of intervention, one could observe a regressively progressive change in the families' attitudinal, cognitive and behavioral aspects, allowed by the patients' desirable social adjustment. Conclusion. These observations are congruent with earlier findings in the west, reinforcing the promising role of education in bringing about desirable changes in the family dynamic which can ensure better outcome for the psychiatric patients' illness.
Kamanu, T.K.; Radovanovic, Aleksandar; Archer, John A.C.; Bajic, Vladimir B.
species. Our results unveil a subclass of miRNAs that may be regulated by genomic imprinting, and also suggest that some miRNA families may be species-specific, as well as chromosome- and/or strand-specific.
Phyllis M. Eaton
Full Text Available This exploratory research paper investigated the coping strategies of families of hospitalized psychiatric patients and identified their positive and negative coping strategies. In this paper, the coping strategies of 45 family members were examined using a descriptive, correlational, mixed method research approach. Guided by the Neuman Systems Model and using the Family Crisis Oriented Personal Evaluation Scales and semistructured interviews, this paper found that these family members used more emotion-focused coping strategies than problem-focused coping strategies. The common coping strategies used by family members were communicating with immediate family, acceptance of their situation, passive appraisal, avoidance, and spirituality. The family members also utilized resources and support systems, such as their immediate families, mental health care professionals, and their churches.
Full Text Available The studies in expressed emotions allowed establishing a pattern in educational and psychoeducative interventions within the families of schizophrenic patients. In this paper, the author synthesises his research developed in expressed emotions of the chronic patient's relatives. The author refers the importance of the relative's cognitive variables about mental representation of the patient and his disease. These variables are studied through the attributions made about the patient's personality and causes of disease. Other cognitive variables are analysed, relying to the conceptualisation in family psycho educative intervention, such as, transactional games, family conflicts and parental relationship style. The evaluation of the relatives and families is considered as being part of the process of family psycho-educative intervention.
Effendy, Christantie; Vissers, Kris; Tejawinata, Sunaryadi; Vernooij-Dassen, Myrra; Engels, Yvonne
Patients with cancer often face physical, psychological, social, spiritual, and emotional symptoms. Our aim was to study symptoms and issues of hospitalized patients with cancer in Indonesia, a country with strong family ties, and how family members, nurses, and physicians deal with them. In 2011, 150 hospitalized cancer patients in 3 general hospitals in Indonesia were invited to fill in a questionnaire, which was based on the validated Problems and Needs of Palliative Care (short version) questionnaire. Descriptive statistics were performed. Of 119 patients (79%) who completed the questionnaire, 85% stated that their symptoms and issues were addressed. According to these patients, financial (56%), autonomy (36%), and psychosocial (34%) issues were most often addressed by the family alone. Physical symptoms (52%) and spiritual issues (33%) were addressed mainly by a combination of family, nurses, and physicians. Hospitalized patients with cancer in Indonesia felt that most of their symptoms and issues had been addressed, and the family was highly involved. The strong family ties in Indonesian culture may have contributed to this family role. More research is needed to clarify how this influences patient outcome, quality of care, and quality of life of both the patients and their families, along with the degree of partnership between families and professionals. This information might help answer the question what advantages and disadvantages the family role in caring for a hospitalized patient with cancer generates for the patient, the family, and professional caregivers. © 2014 World Institute of Pain.
Qu, Ling-Hui; Jin, Xin; Xu, Hai-Wei; Li, Shi-Ying; Yin, Zheng-Qin
Usher syndrome (USH) is the most common cause of combined blindness and deafness inherited in an autosomal recessive mode. Molecular diagnosis is of great significance in revealing the molecular pathogenesis and aiding the clinical diagnosis of this disease. However, molecular diagnosis remains a challenge due to high phenotypic and genetic heterogeneity in USH. This study explored an approach for detecting disease-causing genetic mutations in candidate genes in five index cases from unrelated USH families based on targeted next-generation sequencing (NGS) technology. Through systematic data analysis using an established bioinformatics pipeline and segregation analysis, 10 pathogenic mutations in the USH disease genes were identified in the five USH families. Six of these mutations were novel: c.4398G > A and EX38-49del in MYO7A, c.988_989delAT in USH1C, c.15104_15105delCA and c.6875_6876insG in USH2A. All novel variations segregated with the disease phenotypes in their respective families and were absent from ethnically matched control individuals. This study expanded the mutation spectrum of USH and revealed the genotype-phenotype relationships of the novel USH mutations in Chinese patients. Moreover, this study proved that targeted NGS is an accurate and effective method for detecting genetic mutations related to USH. The identification of pathogenic mutations is of great significance for elucidating the underlying pathophysiology of USH.
Mayron Morais Almeida
Full Text Available Introduction: The burden of care in family refers to the weight caused by the primary caregiver role to psychiatric patients and the difficulties encountered in performing this function in daily life. Objectives: Assessing the objective and subjective overload of family members who live with the reality of psychiatric disorder in a child day-care psychosocial care center. Methods: Cross-sectional study, descriptive-exploratory, of quantitative approach, with non-probabilistic samples of accidental type with 80 families of psychiatric patients held in a Psychosocial Care Center. For overload evaluation, the subscales "B" and "D" of the Family Overload Rating Scale (FBIS-BR were used. Results: The study was conducted with 80 families of psychiatric patients. The average age of female caregivers was 39,6 years old, and 40,7 years old for male caregivers, with female predominance (87,5% compared to men (12,5%, with low education for both genres. Family caregivers presented high objective burden due to excessive demand attention (p<0,001, heteroaggressiveness (p<0,001 and perplexing behavior of psychiatric patients regarding the supervision of problematic behaviors (p<0,001. The items on the impact on the family's daily routine have not helped to generate objective overload for the family members. On subjective overload, it was clear to observe familiar members with high degree of disturbance in all the dimensions assessed (p < 0,001. Conclusion: The high degree of care overload observed in family members indicates the need to develop contacts with the family of the psychiatric patient to answer questions, offer support and assistance to the family caregiver. Keywords: Caregivers. Patients. Mental Health Services.
Carlos Henrique F. Camargo
Full Text Available Cervical dystonia (CD affects the musculature of the neck in a focal way or associated to other parts of the body. The aim of this study was to identify clinical differences between patients with dystonia patients without family history and with family history (sporadic. Eighty-eight patients with CD were recruited in a Movement Disorders Clinic between June of 2008 and June of 2009. Only patients with no etiological diagnosis were accepted for analysis. The age of onset of symptoms was later in patients with focal and segmental dystonia than in patients with generalized dystonia (p<0.001. The severity of symptoms was higher in patients with sporadic dystonia than in familial patients (p<0.01. Generalized cases were more severe in patients with a family history (p<0.01. Sporadic patients had higher levels of pain than familial cases (p<0.05. We expect soon to present the results of genetic analyzes of these patients.
Yaroslawitz, S L; DeGrace, B W; Sloop, J; Arnold, S; Hamilton, T B
Intergenerational transmission of survivor syndrome places the health of family occupation of Chareidi second and third generation survivors of the Holocaust at risk. The purpose of this phenomenological study was to describe the lived experience and capture the essence of family health from the perspective of this cultural group. Guided by phenomenological research design, 5 participants were interviewed. They described their perception of the health of their families and how experiences in Nazi death camps impacted their families' health. Family health is an experience of being together and doing together. Generational transmission of family health was disrupted by the Holocaust. Dysfunction exists in generations that were produced by the survivors. Daily effort is required to reverse the effects of the Holocaust and establish connections with subsequent generations. The essence of occupational therapy is described as "being before doing", which is the cornerstone of individual health and well-being; and in this case family health. This study investigates a cultural group who is experiencing intergenerational transmission of trauma that disrupts family health. Opportunities to examine family health in all settings and consider implications for interventions should be explored.
The purpose of this paper is to define the role of environmental design in improving family integration with patient care in Intensive Care Units (ICUs). It argues that it is necessary to understand family needs, experience and behavioral responses in ICUs to develop effective models for family integration. With its two components—the “healing culture” promoting effective relationships between caregivers and care seekers, and the “environmental design” supporting the healing culture—a “healin...
Mesbur, Ruth E.
When divorce and family disintegration loom, the family physician is often the first outsider on the scene. The family physician may, indeed, have a critical role to play in handling the crisis; he may advise, refer to other professionals like therapists or lawyers, or appear in court as an expert witness. The physician must consider his legal position. Is reconciliation counselling confidential, privileged information? Can he recommend a lawyer for a patient? What is the physician's vulnerab...
Caceres, Billy A; Frank, Mayu O; Jun, Jin; Martelly, Melissa T; Sadarangani, Tina; de Sales, Paloma Cesar
The purpose of this integrative review is to: (1) identify the characteristics of family caregivers of patients with frontotemporal dementia, (2) explore the impact of providing care on family caregivers' health and well-being, and (3) identify coping strategies used by family caregivers. Frontotemporal dementia is thought to be the second most common form of dementia after Alzheimer's disease. Family caregivers of patients with frontotemporal dementia face unique challenges due to its early onset, behavioral symptoms, and slow progression of decline. However, there is a dearth of research evaluating the health and wellbeing of family caregivers of patients with frontotemporal dementia. An integrative review was conducted using the Whittemore and Knafl methodology. An electronic search of the literature was conducted using four electronic databases: PubMed, Embase, CINAHL, and Web of Science. The Crowe Critical Appraisal tool was used to evaluate the quality of the selected articles. Findings of 11 articles informed this integrative review. Family caregivers of patients with frontotemporal dementia identify behavioral disturbances as most troubling. Spouses and female caregivers experience greater caregiver burden, distress, increased rates of depression, as well as decreased sleep related to behavior disturbances. Though less explored, providing care to those with behavioral disturbances may also impact caregiver physical health. Additionally, female caregivers are most likely to employ coping strategies, most commonly, adaptation and reframing. Effective interventions to reduce family caregiver burden are poorly understood but family caregivers suggest education and internet-based support groups are most helpful. Family caregivers of patients with frontotemporal dementia experience significant distress, which impacts their health and wellbeing. It is important for healthcare providers who care for patients with frontotemporal dementia to recognize the unique
Background: The Master's in Family Medicine (M Fam Med) is a postgraduate training programme in family medicine at Medunsa. M Fam Med students have to write patient studies as part of requirements to complete their degree. This research was undertaken to develop a deeper understanding of their perceptions about ...
Two generations of a family who lived in mid-nineteenth rural Sweden are described. Domestic violence was a common feature in the first generation family. The salient feature there was undoubtedly the incestuous father-daughter relationships. The way incest appeared in Sweden about 150 years ago, the role of local authorities, and the serious consequences to those victimized is analyzed with reference to both the cultural context of that time and to modern theories of incest. Seemingly puzzling violence committed by a second generation family member is related to the domestic violence in the previous generation. Due to the extraordinary character of the incest cases and the specific church council sessions in which the incest case was treated, aspects of family life normally hidden behind curtains of conventions were made public. Reaction patterns drawn from this case indicate a patriarchal system of oppression and badly-directed considerations.
Wu, R Ryanne; Himmel, Tiffany L; Buchanan, Adam H; Powell, Karen P; Hauser, Elizabeth R; Ginsburg, Geoffrey S; Henrich, Vincent C; Orlando, Lori A
Studies have shown that the quality of family health history (FHH) collection in primary care is inadequate to assess disease risk. To use FHH for risk assessment, collected data must have adequate detail. To address this issue, we developed a patient facing FHH assessment tool, MeTree. In this paper we report the content and quality of the FHH collected using MeTree. A hybrid implementation-effectiveness study. Patients were recruited from 2009 to 2012. Two community primary care clinics in Greensboro, NC. All non-adopted adult English speaking patients with upcoming appointments were invited to participate. Education about and collection of FHH with entry into MeTree. We report the proportion of pedigrees that were high-quality. High-quality pedigrees are defined as having all the following criteria: (1) three generations of relatives, (2) relatives' lineage, (3) relatives' gender, (4) an up-to-date FHH, (5) pertinent negatives noted, (6) age of disease onset in affected relatives, and for deceased relatives, (7) the age and (8) cause of death (Prim Care31:479-495, 2004.). Enrollment: 1,184. Participant demographics: age range 18-92 (mean 58.8, SD 11.79), 56% male, and 75% white. The median pedigree size was 21 (range 8-71) and the FHH entered into MeTree resulted in a database of 27,406 individuals. FHHs collected by MeTree were found to be high quality in 99.8% (N = 1,182/1,184) as compared to quality of the FHH data that is collected and talking with relatives prior to the collection of FHH significantly improves the quantity and quality of the data provided. This allows more patients to be accurately risk stratified and offered appropriate preventive care guided by their risk level. NCT01372553.
Malohlava, M.; Plášil, F.; Bureš, Tomáš; Hnětynka, P.
Roč. 43, č. 5 (2013), s. 479-499 ISSN 0038-0644 R&D Projects: GA ČR GD201/09/H057 EU Projects: European Commission(XE) ASCENS 257414 Grant - others:GA AV ČR(CZ) GAP103/11/1489 Program:FP7 Institutional research plan: CEZ:AV0Z10300504 Keywords : code generation * domain specific languages * models reuse * extensible languages * specification * program synthesis Subject RIV: JC - Computer Hardware ; Software Impact factor: 1.148, year: 2013
Full Text Available The purpose of this paper is to define the role of environmental design in improving family integration with patient care in Intensive Care Units (ICUs. It argues that it is necessary to understand family needs, experience and behavioral responses in ICUs to develop effective models for family integration. With its two components—the “healing culture” promoting effective relationships between caregivers and care seekers, and the “environmental design” supporting the healing culture—a “healing environment of care” can be an effective family integration model. This paper presents evidence showing how environmental design may affect families in ICUs, and proposes design recommendations for creating a healing environment of care promoting family integration in ICUs.
Zali, Mahnaz; Hassankhani, Hadi; Powers, Kelly A; Dadashzadeh, Abbas; Rajaei Ghafouri, Rouzbeh
Family presence during resuscitation (FPDR) has advantages for the patients' family member to be present at the bedside. However, FPDR is not regularly practiced by nurses, especially in low to middle income countries. The purpose of this study was to determine Iranian nurses' and family members' attitudes towards FPDR. In a descriptive study, data was collected from the random sample of 178 nurses and 136 family members in four hospitals located in Iran. A 27-item questionnaire was used to collect data on attitudes towards FPDR, and descriptive and correlational analyses were conducted. Of family members, particularly the women, 57.2% (n=78) felt it is their right to experience FPDR and that it has many advantages for the family; including the ability to see that everything was done and worry less. However, 62.5% (n=111) of the nurses disagreed with an adult implementation of FPDR. Nurses perceived FPDR to have many disadvantages. Family members becoming distressed and interfering with the patient which may prolong the resuscitation effort. Nurses with prior education on FPDR were more willing to implement it. FPDR was desired by the majority of family members. To meet their needs, it is important to improve Iranian nurses' views about the advantages of the implementation of FPDR. Education on FPDR is recommended to improve Iranian nurses' views about the advantages of the implementation of FPDR. Copyright © 2017 Elsevier Ltd. All rights reserved.
Lee, Mo Yee; Mjelde-Mossey, LeeAnn
In traditional East Asian cultures, high value is assigned to family harmony and filial piety coupled with the expectation that elders will be honored and obeyed. A lifetime of such expectations shapes how elders perceive their role and status in the family. Problems can arise when younger, less traditional, generations do not share these expectations. This article describes a solution-focused approach that facilitates the family in creating a beneficial harmony in situations of cultural dissonance. Family members are empowered to draw on personal strengths in which multiple worldviews and values of individual members are recognized, incorporated, and negotiated.
Fang, Lin; Schinke, Steven P
Underage drinking among Asian American adolescent girls is not well understood. Based on family interaction theory, the study examined the interrelationships among acculturation variables, family relationships, girls' depressed mood, peer alcohol use, and girls' alcohol use in a sample of 130 Asian American mother-daughter dyads. The mediating role of family relationships, girls' depressed mood, and peer alcohol use on girls' drinking was also assessed. The study advances knowledge related to alcohol use among early Asian American adolescent girls, highlights the effect of immigrant generation status and family relationships, and has implications for culturally specific underage drinking prevention programs.
César Cáceres Dagnino
Full Text Available The aim of this paper is to understand how family firms in Italy and Peru prepare for generational change, by comparing three companies from each of these countries. After a theoretical analysis, having examined and compared the literature to define the family business, the business family and the generational change, an empirical analysis has been made using a quantitative survey (STEP 2013-2014 and its model, which makes a revision of a set of constructs, to identify if there is transgenerational potential in the business families. From the comparison of the six companies it appears that, contrary to what was initially thought, there are no such relevant differences. They are only diverse approaches to different problems of the same phenomenon. It is concluded that the six companies have an adequate transgenerational potential and are ready for a successful generational change.
Full Text Available Background: Congenital microcoria (CMC is due to a maldevelopment of the dilator pupillae muscle of the iris, with a pupil diameter of less than 2 mm. It is associated with juvenile open angle glaucoma and myopia. We report on a three-generation Mexican-Mestizo family with CMC. The eldest member’s iris biopsy proved muscle anomalies. Further, we analyzed novel ultrasound biomicroscopy findings in the family members who did not require surgery. Patients and Methods: A 62-year-old woman, her 41-year-old son and her 9-year-old grandson affected with microcoria since birth, documented by clinical examination and ultrasound biomicroscopy. The eldest member underwent phacoemulsification, and a biopsy of the iris and the anterior capsule of the lens was taken. Results: Ultrasound biomicroscopy confirmed the CMC diagnosis showing iris thinning and a pupil diameter of less than 2 mm. Histopathology of the iris showed a significant reduction of smooth muscle cells, but no alterations of the anterior lens capsule. Discussion: Although CMC is a rare disorder, which is due to a maldevelopment of the dilator pupillae muscle of the iris, it could be associated with juvenile open angle glaucoma and myopia; therefore, precise diagnosis is required. Ultrasound biomicroscopy could be a great option to confirm the disorder.
Full Text Available Migraine is a disorder that has debilitating pain, and affects all aspects of life, including the academic, social, and family life of patients. In addition, studies show the effects of migraine on patient's relationships with family members such as spouse, children, and other family members. In addition to physical pain, migraines are tied to significant psychological and economic costs. Migraineurs tend to have high levels of depression and anxiety, and migraine headaches have a profoundly negative impact on sufferers’ quality of life. In the present research, we investigated the correlations and regressions of cognitive, personality, and family factors with migraine headache, to find predictor factors of migraine. In this study, the following questionnaires were used: For migraine: six-item Headache Impact Test (HIT-6, and Specific Quality of Life Questionnaire Version 2.1.; for cognitive factors: Irrational Beliefs Test and Dysfunctional Attitudes Scale; for personality factors: NEO Personality Inventory; and for family factors: Family Assessment Device. This project was on 58 women with migraine headaches, diagnosed by neurologist. The findings show that, there is a significant regression between cognitive, personality, and family factors and HIT-6. In cognitive factors, frustration reactivity and anxious overconcern, in personality factors, extraversion trait, and in family factors, affective involvement are significant. Moreover, there is a significant regression between cognitive, personality, and family factors and MSQ. In cognitive factors, frustration reactivity, anxious overconcern, and helplessness, in personality factors, agreeableness and consciousness, and in family factors, affective involvement and general functioning are significant. This project showed that cognitive, personality, and family factors have a correlation with migraine headache.
Bademli, Kerime; Duman, Zekiye Çetinkaya
"Family to Family Support Program" is a significant intervention program to assist families by informing them about treatment procedures and coping strategies, increasing their functionality, helping them to overcome the challenges of the disease. This study was particularly designed to investigate the emotions, thoughts, and experiences of caregivers of schizophrenia patients who participated in "Family to Family Support Program." The study was conducted with one of the qualitative research methods, phenomenological method. The study sample included caregivers who care for schizophrenia patients and participated in the "Family to Family Support Program". Twenty caregivers were included in the sample. The study was carried out in İzmir Schizophrenia Support Association. The study data were collected with four open ended questions. The average age of the participants was 56,77 ± 72,89, 10 male caregivers and 10 female caregivers, 9 caregivers were fathers, 6 caregivers were mothers, and 5 of them were siblings. The thematic analysis indicated that the emotions, thoughts and experiences of caregivers can be categorized in four groups: "I learned to deal with my problems", "I am conscious in my interaction with the patient and I know and I am not alone", "I feel much better", and "Schizophrenia is not the end of the road, knowledge sorts things out." Caregivers who participated in "Family to Family Support Program" expressed their satisfaction that they were benefited from the program, their coping skills were improved, they experienced less challenges when providing care, they understood the disease better, and it felt comfortable. Copyright © 2015 Elsevier Inc. All rights reserved.
Visser-Meily, Anne; Post, Marcel; Gorter, Jan Willem; Berlekom, Steven Berdenis V.; van den Bos, Trudi; Lindeman, Eline
To highlight the importance of the spouse in stroke rehabilitation. Stroke not only affects the patients, but also their families, but rehabilitation practice is still primarily focused on the patient only. Analysis of the position of the spouse and possible consequences of stroke for the spouse,
Full Text Available PURPOSE: To screen the first degree relatives of patient diagnosed with keratoconus . MATERIALS AND METHODS : All the patients included in the study, patient details were taken which included - name, age, gender, hospital number, address and family history [pedigree tree] . All the patients underwent refraction, best corrected visual acuity, colour vision , keratometry, intraocular pressure measurement and corneal topography [orbscan]. Family screening was done, which included - refraction, best corrected visual acuity, colour vision, keratometry, intraocular pressure and corneal topography [orbscan]. RESULTS: In this study of 40 eyes, 24 eyes [Right eyes - 12 & Left eyes - 12] i.e. 60% have keratoconus, 3 eyes [2 - Right eyes & 1 - Left eye] i.e.15% have advanced keratoconus, 12 eyes [Right eye - 6 & Left eye - 6] i.e. 30% have VKC & Keratoconus, 1 eye have acute hydrops. Total family members screened 55, out of that 17 members are fathers, 20 members are mothers, 12 members are brothers and 6 are sisters
Full Text Available We present the genetic analyses conducted on a three-generation family (14 individuals with three members affected with isolated-Hirschsprung disease (HSCR and one with HSCR and heterochromia iridum (syndromic-HSCR, a phenotype reminiscent of Waardenburg-Shah syndrome (WS4. WS4 is characterized by pigmentary abnormalities of the skin, eyes and/or hair, sensorineural deafness and HSCR. None of the members had sensorineural deafness. The family was screened for copy number variations (CNVs using Illumina-HumanOmni2.5-Beadchip and for coding sequence mutations in WS4 genes (EDN3, EDNRB, or SOX10 and in the main HSCR gene (RET. Confocal microscopy and immunoblotting were used to assess the functional impact of the mutations. A heterozygous A/G transition in EDNRB was identified in 4 affected and 3 unaffected individuals. While in EDNRB isoforms 1 and 2 (cellular receptor the transition results in the abolishment of translation initiation (M1V, in isoform 3 (only in the cytosol the replacement occurs at Met91 (M91V and is predicted benign. Another heterozygous transition (c.-248G/A; -predicted to affect translation efficiency- in the 5'-untranslated region of EDN3 (EDNRB ligand was detected in all affected individuals but not in healthy carriers of the EDNRB mutation. Also, a de novo CNVs encompassing DACH1 was identified in the patient with heterochromia iridum and HSCR Since the EDNRB and EDN3 variants only coexist in affected individuals, HSCR could be due to the joint effect of mutations in genes of the same pathway. Iris heterochromia could be due to an independent genetic event and would account for the additional phenotype within the family.
Huang, Xiaoyan; Tian, Mao; Li, Jiankang; Cui, Ling; Li, Min; Zhang, Jianguo
Purpose: Norrie disease (ND) is a rare X-linked genetic disorder, the main symptoms of which are congenital blindness and white pupils. It has been reported that ND is caused by mutations in the NDP gene. Although many mutations in NDP have been reported, the genetic cause for many patients remains unknown. In this study, the aim is to investigate the genetic defect in a five-generation family with typical symptoms of ND. Methods: To identify the causative gene, next-generation sequencing bas...
Lopes, Fábio; Espirito-Santo, Helena; Vicente, Henrique
Introduction The transmission of perceived parental rearing styles through generations has been proved in several studies, mostly in studies with two generations samples. Objectives/aims The main aim of this study is to investigate the intergenerational transmission of the perception of parental rearing styles in families composed by three generations. Methodology A convenience sample of 143 participants was collected, belonging to a female lineage subsystem, divided in three...
Full Text Available We aimed to inverstigate changes in family functions in patients with premature ejaculation.Materials and methods: In the present study, study group were randomly selected from Mustafa Kemal University Medical School Research and Training Hospital Urology Department outpatients clinic. Control group were selected among healthy volunteers. Totally 30 patients were included in the PE group and 30 healthy volunteers were included in the control group. Subjects were examined by the same psychiatrist. Beck Anxiety Inventory and Family Assessment Scale were applied to both groupsResults: Compared with the control group, premature ejaculation patients had significantly higher anxiety scores (p=0.001 and more deterioration in problem solving (p=0.001, communication (p=0.022, affective responsiveness (p=0.011, behavior control (p=0.032, and affective involvement in their families (p=0.011. There were no difference in terms of roles and general functions scores (p>0.05.Conclusion: It can be concluded that there is deterioration in family functions in patients with premature ejaculation, Therefore, approaches targeting family functions may be beneficial in the treatment of these patients.
Palacios-Derflingher, Luz; O'Beirne, Maeve; Sterling, Pam; Zwicker, Karen; Harding, Brianne K; Casebeer, Ann
Safety culture has been shown to affect patient safety in healthcare. While the United States and United Kingdom have studied the dimensions that reflect patient safety culture in family practice settings, to date, this has not been done in Canada. Differences in the healthcare systems between these countries and Canada may affect the dimensions found to be relevant here. Thus, it is important to identify and compare the dimensions from the United States and the United Kingdom in a Canadian context. The objectives of this study were to explore the dimensions of patient safety culture that relate to family practice in Canada and to determine if differences and similarities exist between dimensions found in Canada and those found in previous studies undertaken in the United States and the United Kingdom. A qualitative study was undertaken applying thematic analysis using focus groups with family practice offices and supplementary key stakeholders. Analysis of the data indicated that most of the dimensions from the United States and United Kingdom are appropriate in our Canadian context. Exceptions included owner/managing partner/leadership support for patient safety, job satisfaction and overall perceptions of patient safety and quality. Two unique dimensions were identified in the Canadian context: disclosure and accepting responsibility for errors. Based on this early work, it is important to consider differences in care settings when understanding dimensions of patient safety culture. We suggest that additional research in family practice settings is critical to further understand the influence of context on patient safety culture.
Full Text Available Family is an integral part of society in all cultures and time periods. Its mission is to raise the next generation, which will be able to continue and further develop knowledge and experience of the previous generation. The modern history of family entrepreneurship in Czech Republic restarted back in 1989, i.e., straight after the fall of the communist regime and restoration of the democratic system. People went into business with enthusiasm and the most successful ones among then now stand on the verge of generation handover. The literature review prepared using the desk-research method is mainly based on foreign professional sources – monographic publications, scientific articles published in professional magazines, accessed from Proquest, Web of Science, Ebsco, Scopus and some other databases. The objective of our quantitative research was to evaluate, based on parameter E (Experience, the generational representation of family members in relation to leadership and ownership of businesses. Quantitative research was based on the use of statistical and graphical data processing methods, including SPSS software, applied for the authors’ own empirical investigation based on the international methodology of family company review through the F-PEC scale, the Experience parameter (Astrachan et al., 2002. It was shown that accumulation of business experience in business families is still mainly concentrated on the founding generation of entrepreneurs. In the conclusion of the paper, deduction and generalisation methods have been applied.
Shin, Dong Wook; Cho, Juhee; Roter, Debra L; Kim, So Young; Yang, Hyung Kook; Park, Keeho; Kim, Hyung Jin; Shin, Hee-Young; Kwon, Tae Gyun; Park, Jong Hyock
To investigate how cancer patients, family caregiver, and their treating oncologist view the risks and benefits of family involvement in cancer treatment decision making (TDM) or the degree to which these perceptions may differ. A nationwide, multicenter survey was conducted with 134 oncologists and 725 of their patients and accompanying caregivers. Participant answered to modified Control Preferences Scale and investigator-developed questionnaire regarding family involvement in cancer TDM. Most participants (>90%) thought that family should be involved in cancer TDM. When asked if the oncologist should allow family involvement if the patient did not want them involved, most patients and caregivers (>85%) thought they should. However, under this circumstance, only 56.0% of oncologists supported family involvement. Patients were significantly more likely to skew their responses toward patient rather than family decisional control than were their caregivers (P family decisional control than caregivers (P family involvement is helpful and neither hamper patient autonomy nor complicate cancer TDM process. Oncologists were largely positive, but less so in these ratings than either patients or caregivers (P family caregivers, and, to a lesser degree, oncologists expect and valued family involvement in cancer TDM. These findings support a reconsideration of traditional models focused on protection of patient autonomy to a more contextualized form of relational autonomy, whereby the patient and family caregivers can be seen as a unit for autonomous decision. Copyright © 2016 John Wiley & Sons, Ltd.
Kentish-Barnes, Nancy; Lemiale, Virginie; Chaize, Marine; Pochard, Frédéric; Azoulay, Elie
To provide critical care clinicians with information on validated instruments for assessing burden in families of critical care patients. PubMed (1979-2009). We included all quantitative studies that used a validated instrument to evaluate the prevalence of, and risk factors for, burden on families. We extracted the descriptions of the instruments used and the main results. Family burden after critical illness can be detected reliably and requires preventive strategies and specific treatments. Using simple face-to-face interviews, intensivists can learn to detect poor comprehension and its determinants. Instruments for detecting symptoms of anxiety, depression, or stress can be used reliably even by physicians with no psychiatric training. For some symptoms, the evaluation should take place at a distance from intensive care unit discharge or death. Experience with families of patients who died in the intensive care unit and data from the literature have prompted studies of bereaved family members and the development of interventions aimed at decreasing guilt and preventing complicated grief. We believe that burden on families should be assessed routinely. In clinical studies, using markers for burden measured by validated tools may provide further evidence that effective communication and efforts to detect and to prevent symptoms of stress, anxiety, or depression provide valuable benefits to families.
Septer, Seth; Bohaty, Brenda; Onikul, Robin; Kumar, Vandana; Williams, Karen B; Attard, Thomas M; Friesen, Craig A; Friesen, Lynn Roosa
Familial adenomatous polyposis patients often present with non-malignant extra-intestinal manifestations which include dental anomalies that may be evident prior to the appearance of the colonic adenomas. The aims of this study were to describe the prevalence and type of dental anomalies and the relationships between gene mutations and dental anomalies in these patients. Twenty-two pediatric familial adenomatous polyposis patients and 46 controls, who were age and gender matched participated. Familial adenomatous polyposis patient's had a dental examination with panoramic radiograph and medical record review for age at diagnosis, the presence of the adenomatous polyposis coli gene mutation, and determination of other extra-intestinal manifestations on the body. The control group was identified from a retrospective chart review and selected if there was a current panoramic radiograph. The only significant difference between familial adenomatous polyposis patients and controls were the presence of jaw osteomas and sclerosis (p = .0001). Patients with a mutation in, or upstream of codon 1309 had a higher frequency of osteomas (77.8%) and jaw-bone sclerosis (44.4%), and 77% of these had at least one dental anomaly. This preliminary study showed an association between a genetic variant at, or upstream of codon 1309, and radiographic dental anomalies.
Yurube, Takashi; Kakutani, Kenichiro; Okamoto, Koji; Manabe, Michihiko; Maeno, Koichiro; Yoshikawa, Masaho; Sha, Norihide; Kuroda, Ryosuke; Nishida, Kotaro
Spondylolysis is a major cause of back pain in children and adolescents. The prevalence of spondylolysis depends on the sex, race, and congenital abnormality. These biases suggest hereditary predisposition as an etiology of spondylolysis. However, no conclusive evidence still exists regarding the inheritance for spondylolysis. Herein, we report rare cases with familial occurrence of lumbar spondylolysis. In two generations of a Japanese family, three brothers including identical twins complai...
Ridgeway, Jennifer L; Asiedu, Gladys B; Carroll, Katherine; Tenney, Meaghan; Jatoi, Aminah; Radecki Breitkopf, Carmen
Clinical trials are vital in the context of ovarian cancer and may offer further treatment options during disease recurrence, yet enrollment remains low. Understanding patient and family member experiences with identifying trials can inform engagement and education efforts. Interviews were conducted with 33 patients who had experience with clinical trial conversations and 39 nominated family members. Thematic analysis examined experiences and generated findings for clinical practice. Trial conversations with providers at diagnosis were uncommon and often overwhelming. Most participants delayed engagement until later in the disease course. With hindsight, though, some wished they considered trials earlier. Difficulty identifying appropriate trials led some to defer searching to providers, but then they worried about missed opportunities. Most family members felt unqualified to search. Trial conversations during clinical encounters should start early and include specifying search responsibilities of providers, patients, and family. Patients and family members can be engaged in searches but need guidance. Trials should be discussed throughout the disease course, even if patients are not ready to participate or are not making a treatment decision. Education should focus on identifying trials that meet search criteria. Transparency regarding each individual's role in identifying trials is critical. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.
Baumhover, Nancy C
A focus on cost-effective quality end-of-life care remains a high priority in adult critical care given an aging population, high prevalence of death, and aggressive technologies used to extend or sustain life in this setting. A Glaserian grounded theory design was used to conduct this retrospective study to yield a substantive middle-range theory. The data source was semistructured interviews with 14 family members of decedents who died 6 to 60 months prior to the study. The purpose of this study was to generate a theory on how family members of patients in adult critical care come to realize that their loved one is dying. The Process of Death Imminence Awareness by Family Members of Patients in Adult Critical Care middle-range theory contained 6 phases: (1) patient's near-death awareness, (2) dying right in front of me, (3) turning points in the patient's condition, (4) no longer the person I once knew, (5) doing right by them, and (6) time to let go. Patient's near-death awareness preceded all other phases, if communicated by the decedent with their family. Then, family members iteratively moved through all the other key phases in the process until a time to let go became evident. This substantive middle-range theory will guide nursing education, practice, and research aimed at providing quality and cost-effective end-of-life care in adult critical care.
Keywords: biogas; family size; generator; electricity; bio-filter. Article History: Received Janury 16th 2017; Received in revised form 2nd June 2017; Accepted 18th June 2017; Available online How to Cite This Article: Haryanto, A., Marotin, F., Triyono, S., Hasanudin, U. (2017, Developing A Family-Size Biogas-Fueled Electricity Generating System. International Journal of Renewable Energy Develeopment, 6(2, 111-118. https://doi.org/10.14710/ijred.6.2.111-118
Dieperink, Karin B; Coyne, Elisabeth; Creedy, Debra K; Østergaard, Birte
This study aimed to compare family functioning and perceptions of support from nurses among Danish and Australian adult oncology patients and family members. Family can have a strong influence on the health of individuals, providing support during a health crisis such as cancer. However, family functioning and supportive care from nurses may vary across cultures and settings. A descriptive, cross-sectional comparative design with patients and family members from Denmark and Australia. Participants were asked to fill in translated versions of the Iceland-Expressive Family Functioning Questionnaire (ICE-EFFQ) and Iceland-Expressive Family Perceived Support Questionnaire (ICE-FPSQ). In total, 232 participants were recruited. The Danish cohort consisted of 56 patients and 54 family members. The Australian cohort consisted of 83 patients and 39 family members. Mean age was 59 years. No significant differences were found between Danish and Australian families. However, compared to patients, family members reported significantly lower overall family functioning, expressive emotions and communication, as well as less emotional support from nurses. Family functioning was comparable between Denmark and Australia. Family members reported less emotional support than patients. Nurses need to consider the patient and the family as a unit with complex needs that require monitoring and attention during oncology treatment. Families supporting a member with cancer have significant and often unmet needs. Assessment, information-sharing and health education need to include the family. Supportive care information may be shared between Denmark and Australia and inspires the development of common guidelines for optimal family nursing practice. © 2017 John Wiley & Sons Ltd.
Jensen, Hanne Irene; Gerritsen, Rik T; Koopmans, Matty
as reflective indicators was supported by analysis of a factor representing satisfaction with communication, measured with a combination of causal and reflective indicators. CONCLUSIONS: Most family members were moderately or very satisfied with patient care, family care, information and decision-making...... in and support during decision-making processes. Exploratory factor analysis suggested four underlying factors, but confirmatory factor analysis failed to yield a multi-factor model with between-country measurement invariance. A hypothesis that this failure was due to misspecification of causal indicators......BACKGROUND: Families' perspectives are of great importance in evaluating quality of care in the intensive care unit (ICU). This Danish-Dutch study tested a European adaptation of the "Family Satisfaction in the ICU" (euroFS-ICU). The aim of the study was to examine assessments of satisfaction...
Kageyama, Masako; Yokoyama, Keiko; Nagata, Satoko; Kita, Sachiko; Nakamura, Yukako; Kobayashi, Sayaka; Solomon, Phyllis
Family violence is a serious concern in the era of deinstitutionalization in Japan. Consequently, we aimed to clarify the rate of family violence among patients with schizophrenia, and differences by sex and relationship to the patient. We asked households belonging to a family group association to complete a self-administered mail survey. Of 350 households that responded, data for 302 were analyzed. The rate of violence toward any family member was 60.9% over the lifetime and 27.2% in the past year. Order of lifetime rates for family members from highest to lowest was 51.0% for mothers, 47.0% for fathers, 30.7% for younger sisters, 23.8% for spouses, 19.5% for younger brothers, 18.2% for older sisters, 17.1% for older brothers, and none for children. Younger sisters were more likely to be victims compared to other siblings. Fathers and older brothers were likely to be victims when patients were male. © 2015 APJPH.
Yaman, Ayşe; Mesman, Judi; van Ijzendoorn, Marinus H; Bakermans-Kranenburg, Marian J
Examining family stress and parenting efficacy in relation to child externalizing problems in immigrant families. In this study, we compared the levels of family stress, parenting efficacy, and toddler externalizing behaviors in Dutch (n = 175) and second-generation Turkish immigrant families (n = 175) living in the Netherlands. In addition, the influence of Turkish mothers' acculturation on toddler externalizing behaviors and its association with perceived stress and efficacy were examined. Turkish mothers reported higher levels of daily stress and marital discord than Dutch mothers, but did not differ in perceptions of parenting efficacy and children's externalizing behaviors. The associations between child and family variables were similar in the Dutch and the Turkish groups, as more family stress was related to more externalizing behaviors in toddlers. Low parenting efficacy was the most important predictor of child externalizing behaviors in both groups. Acculturation of Turkish mothers was not associated with family and child variables, and did not moderate the association between family variables and child externalizing behaviors. However, emotional connectedness to the Turkish culture was related to less daily stress and fewer marital problems. The results support the no-group differences hypothesis and also imply that cultural maintenance may be adaptive for parental well-being.
Chang, Janet; Natsuaki, Misaki N; Chen, Chih-Nan
The present study utilized data from the National Latino and Asian American Study to examine ethnic and generational differences in family cultural conflict and family cohesion and how the effects of such family conflict and cohesion on lifetime service use vary by generation status for Latino Americans (n = 2,554) and Asian Americans (n = 2,095). Findings revealed that first-generation Asian Americans reported greater family cultural conflict than their Latino counterparts, but third-generation Latino Americans had higher family conflict than their Asian American counterparts. First-generation Latino and Asian Americans had the highest levels of family cohesion. Results from logistic regression analyses indicated that Latino Americans who reported higher family cultural conflict and lower family cohesion were more likely to use mental health services. For Asian Americans, family cultural conflict, but not family cohesion, was associated with service use. Relative to third-generation Asian Americans, second-generation Asian Americans with higher family cultural conflict were more likely to use mental health services. Given that cohesive familial bonds appear to discourage service use on the part of Latino Americans irrespective of generation status, further research is needed to ascertain the extent to which this tendency stems from greater reliance on family support as opposed to the stigma associated with mental health treatment. Mental health providers and treatment programs need to address the role of family cultural conflict in the lives of Asian Americans, particularly second generation, and Latino Americans across generations, because conflictual family ties may motivate help-seeking behaviors and reveal substantial underlying distress. PsycINFO Database Record (c) 2013 APA, all rights reserved.
suffering in addition to feelings of powerlessness, guilt , anger, ambivalence, and fear for the patient and themselves. Another task for the family is...patients had breast cancer, five patients had lung cancer, five more had cancer of the gastrointestinal tract, three had cancer of the liver or pancreas ...the patient 3.03 1.07 E 14. To talk about feelings such as anger or guilt 3.03 1.07 E 15. To have comfortable furniture in the waiting room 2.82 0.90 P
Holmegard, Haya N; Benn, Marianne; Kaijer, Michelle Nymann
Reflex syncope is defined by a rapid transient loss of consciousness caused by global cerebral hypoperfusion resulting from vasodilatation and/or bradycardia attributable to inappropriate cardiovascular reflexes. A hereditary component has been suggested, but prevalence of family history may differ...... among subtypes of reflex syncope, as these have different autonomic responses and pathogeneses may be diverse. The present study aimed to assess the prevalence of a positive family history of syncope and cardiovascular characteristics in patients with cardioinhibitory and vasodepressor reflex syncope....... Patients (n=74) were classified into subtypes of reflex syncope - cardioinhibition/asystole (Vasovagal Syncope International Study subtypes II-B [VASIS II-B], n=38) or vasodepressor (VASIS III, n=36) - using the head-up tilt test. Family history was obtained by questionnaires supplemented by interview...
Płaszewska-Żywko, Lucyna; Gazda, Dorota
The aim of the study was to determine emotional reactions and needs of families of ICU patients. The study group included 60 relatives of ICU patients, aged 18-80 years. The diagnostic questionnaire-based survey was conducted. The questionnaire contained questions regarding demographic data, emotions and needs as well as the Courtauld Emotional Control Scale (CECS). The major emotions of patients' families on ICU admission were anxiety, uncertainty, fear, depression, and nervousness (particularly among parents and adult offsprings). On second-third day of hospitalisation, the emotions became less severe (P emotional reactions were better controlled by men (P emotions (P emotions of ICU patients' relatives were highly intense, especially amongst parents and adult children. Women were characterised by higher levels of emotions and needs compared to men.
Emerencia, A.; van der Krieke, Lian; Sytema, S.; Petkov, N.; Aiello, M.
The results of routine patient assessments in psychiatric healthcare in the Northern Netherlands are primarily used to support clinicians. We developed Wegweis, a web-based advice platform, to make this data accessible and understandable for patients. Objective: We show that a fully automated
Huang, Xiaoyan; Tian, Mao; Li, Jiankang; Cui, Ling; Li, Min; Zhang, Jianguo
Norrie disease (ND) is a rare X-linked genetic disorder, the main symptoms of which are congenital blindness and white pupils. It has been reported that ND is caused by mutations in the NDP gene. Although many mutations in NDP have been reported, the genetic cause for many patients remains unknown. In this study, the aim is to investigate the genetic defect in a five-generation family with typical symptoms of ND. To identify the causative gene, next-generation sequencing based target capture sequencing was performed. Segregation analysis of the candidate variant was performed in additional family members using Sanger sequencing. We identified a novel missense variant (c.314C>A) located within the NDP gene. The mutation cosegregated within all affected individuals in the family and was not found in unaffected members. By happenstance, in this family, we also detected a known pathogenic variant of retinitis pigmentosa in a healthy individual. c.314C>A mutation of NDP gene is a novel mutation and broadens the genetic spectrum of ND.
Full Text Available Purpose: Norrie disease (ND is a rare X-linked genetic disorder, the main symptoms of which are congenital blindness and white pupils. It has been reported that ND is caused by mutations in the NDP gene. Although many mutations in NDP have been reported, the genetic cause for many patients remains unknown. In this study, the aim is to investigate the genetic defect in a five-generation family with typical symptoms of ND. Methods: To identify the causative gene, next-generation sequencing based target capture sequencing was performed. Segregation analysis of the candidate variant was performed in additional family members using Sanger sequencing. Results: We identified a novel missense variant (c.314C>A located within the NDP gene. The mutation cosegregated within all affected individuals in the family and was not found in unaffected members. By happenstance, in this family, we also detected a known pathogenic variant of retinitis pigmentosa in a healthy individual. Conclusion: c.314C>A mutation of NDP gene is a novel mutation and broadens the genetic spectrum of ND.
This study aimed at assessing the pattern of family planning methods used by antenatal patients at Federal Medical Centre, Owo, Ondo State, Nigeria. The study was conducted between December,2007 and February,2008 at the antenatal clinic of the hospital. Ethical clearance was obtained from the Ethical committee of ...
Jang, Sung-In; Bae, Hong-Chul; Shin, Jaeyong; Jang, Suk-Yong; Hong, Seri; Han, Kyu-Tae; Park, Eun-Cheol
Dementia is the leading cause of disability worldwide in the elderly individuals. Although prior studies have examined psychiatric symptoms in dementia caregivers, few studies have examined physician-diagnosed depression in the family caregiver of a patient with dementia. We used data from 457 864 respondents from the Korea Community Health Survey. We used logistic regression to examine the relationship between physician-diagnosed depression and cohabitation with a patient with dementia. Cohabitation with a patient with dementia (1.2% of the Korean population) was significantly associated with physician-diagnosed depression. The significance remained in females when the data were stratified by sex. A significant association also occurred among males with low family income. To reduce the burden of dementia, we need a management policy that includes the caregiver as well as the patient with dementia. In particular, political management for the vulnerable population, male caregiver in low-income family and female caregiver in high-income family, should be prepared. © The Author(s) 2016.
Sohr-Preston, Sara L.; Scaramella, Laura V.; Martin, Monica J.; Neppl, Tricia K.; Ontai, Lenna; Conger, Rand
This third-generation, longitudinal study evaluated a family investment perspective on family socioeconomic status (SES), parental investments in children, and child development. The theoretical framework was tested for first-generation parents (G1), their children (G2), and the children of the second generation (G3). G1 SES was expected to…
Full Text Available The research investigated the issue of TV ads in the context of cultural studies and from the critical- cultural perspective. This study has focused on the family in order to read culture among the advertisements, so family from both the gender and generational relations has been analyzed. The main focus of the research is on the policy of representation of TV commercials across the country about couple bilateral relations and parent-child generational bilateral relations in Iranian families, in this way the power structure in the family can be understood. Using qualitative methods, this research has done based on the general principles of semiotics and followed the principles of “first order implications” that is centered mostly in syntagmatic axis and “second-order implications” assigned to Roland Barthes that has replaced in the axis of succession. This research shows that TV ads in “subjective aspect of power” with showing mental images consistent with male-dominated system, and in “objective aspect of power” with showing stereotypes that in the first step men(sexual and in the second step parents (generational make the final decision, leads to reproduction of power gap and inequality in family relationships.
Mazor, Kathleen M; Beard, Reneé L; Alexander, Gwen L; Arora, Neeraj K; Firneno, Cassandra; Gaglio, Bridget; Greene, Sarah M; Lemay, Celeste A; Robinson, Brandi E; Roblin, Douglas W; Walsh, Kathleen; Street, Richard L; Gallagher, Thomas H
To explore patients' and family members' views on communication during cancer care and to identify those aspects of clinician-patient communication which were most important to patients and family members. We conducted a secondary data analysis of qualitative data from 137 patients with cancer and family members of patients with cancer. We used a modified version of the constant comparative method and coding paradigm of grounded theory. Patients want sensitive, caring clinicians who provide information that they need, when they need it, in a way that they can understand; who listen and respond to questions and concerns, and who attempt to understand the patient's experience. Effective information exchange and a positive interpersonal relationship with the clinician were of fundamental importance to patients and family members. These were interrelated; for instance, failure to provide information a patient needed could damage the relationship, whereas excellent listening could foster the relationship. Information exchange and relationship were also integral to decision-making, managing uncertainty, responding to emotions, and self-management. Clinicians who were responsive to patients' needs beyond the immediate medical encounter were valued. The complexity of cancer care today suggests that efforts to improve communication must be multilevel, acknowledging and addressing patient, clinician, organizational and policy barriers, and facilitators. Measurement tools are needed to assess cancer patients' and family members' experiences with communication over the course of cancer care to provide meaningful, actionable feedback to those seeking to optimize their effectiveness in communicating with patients with cancer. Copyright © 2013 John Wiley & Sons, Ltd.
Traces native language usage among three generations of a Lakota family, explaining one woman's decision not to teach her children Lakota to protect them from abuse at a boarding school and her descendants' efforts to learn and preserve their language. Offers a Lakota studies and language instructor's perspective on his students' hunger for their…
Ozdemir, R. Sertan; St. Louis, Kenneth O.; Topbas, Seyhun
Purpose: Attitudes toward stuttering, measured by the "Public Opinion Survey of Human Attributes-Stuttering" ("POSHA-S"), are compared among (a) two different representative samples; (b) family generations (children, parents, and either grandparents or uncles and aunts) and neighbors; (c) children, parents, grandparents/adult…
In this study, the effects of family leadership orientation on social entrepreneurship, generativity and academic education success were examined with the views of college students. The study was conducted at a state university in Central Anatolia in Turkey. 402 college students who attending at three different colleges voluntarily participated in…
In this thesis nutrition attitudes, beliefs, and fat intake in three generations of women are described. The aim of the study was twofold: the development of methods, and to study family resemblance in food habits. Based on literature study and qualitative pilot studies a questionnaire on
Full Text Available Amelogenesis Imperfecta is a hereditary condition affecting dental enamel without any systemic manifestation. This condition can be inherited as either Autosomal or X-linked. In this case report, we discuss with the help of Pedigree Analysis, an account of three generations in a family affected by Autosomal Dominant, Hypoplastic type of Amelogenesis Imperfecta.
Iacocca, Michael A; Wang, Jian; Dron, Jacqueline S; Robinson, John F; McIntyre, Adam D; Cao, Henian; Hegele, Robert A
Familial hypercholesterolemia (FH) is a heritable condition of severely elevated LDL cholesterol, caused predominantly by autosomal codominant mutations in the LDL receptor gene ( LDLR ). In providing a molecular diagnosis for FH, the current procedure often includes targeted next-generation sequencing (NGS) panels for the detection of small-scale DNA variants, followed by multiplex ligation-dependent probe amplification (MLPA) in LDLR for the detection of whole-exon copy number variants (CNVs). The latter is essential because ∼10% of FH cases are attributed to CNVs in LDLR ; accounting for them decreases false negative findings. Here, we determined the potential of replacing MLPA with bioinformatic analysis applied to NGS data, which uses depth-of-coverage analysis as its principal method to identify whole-exon CNV events. In analysis of 388 FH patient samples, there was 100% concordance in LDLR CNV detection between these two methods: 38 reported CNVs identified by MLPA were also successfully detected by our NGS method, while 350 samples negative for CNVs by MLPA were also negative by NGS. This result suggests that MLPA can be removed from the routine diagnostic screening for FH, significantly reducing associated costs, resources, and analysis time, while promoting more widespread assessment of this important class of mutations across diagnostic laboratories. Copyright © 2017 by the American Society for Biochemistry and Molecular Biology, Inc.
Collier, Aileen; Wyer, Mary
Patient safety research has to date offered few opportunities for patients and families to be actively involved in the research process. This article describes our collaboration with patients and families in two separate studies, involving end-of-life care and infection control in acute care. We used the collaborative methodology of video-reflexive ethnography, which has been primarily used with clinicians, to involve patients and families as active participants and collaborators in our research. The purpose of this article is to share our experiences and findings that iterative researcher reflexivity in the field was critical to the progress and success of each study. We present and analyze the complexities of reflexivity-in-the-field through a framework of multilayered reflexivity. We share our lessons here for other researchers seeking to actively involve patients and families in patient safety research using collaborative visual methods. © The Author(s) 2015.
Post, Robert M; Altshuler, Lori L; Kupka, Ralph; McElroy, Susan L; Frye, Mark A; Rowe, Michael; Grunze, Heinz; Suppes, Trisha; Keck, Paul E; Nolen, Willem A
Patients with bipolar disorder from the US have more early-onset illness and a greater familial loading for psychiatric problems than those from the Netherlands or Germany (abbreviated here as Europe). We hypothesized that these regional differences in illness burden would extend to the patients siblings. Outpatients with bipolar disorder gave consent for participation in a treatment outcome network and for filling out detailed questionnaires. This included a family history of unipolar depression, bipolar disorder, suicide attempt, alcohol abuse/dependence, drug abuse/dependence, and "other" illness elicited for the patients' grandparents, parents, spouses, offspring, and siblings. Problems in the siblings were examined as a function of parental and grandparental problems and the patients' adverse illness characteristics or poor prognosis factors (PPFs). Each problem in the siblings was significantly (pUS than in those from Europe. In the US, problems in the parents and grandparents were almost uniformly associated with the same problems in the siblings, and sibling problems were related to the number of PPFs observed in the patients. Family history was based on patient report. Increased familial loading for psychiatric problems extends through 4 generations of patients with bipolar disorder from the US compared to Europe, and appears to "breed true" into the siblings of the patients. In addition to early onset, a variety of PPFs are associated with the burden of psychiatric problems in the patients' siblings and offspring. Greater attention to the multigenerational prevalence of illness in patients from the US is indicated. Copyright © 2016 Elsevier B.V. All rights reserved.
Leow, Mabel Q H; Chan, Sally W C
Caring for a family member with advanced cancer at home is demanding as the ill family member is likely to have complex physical and emotional needs. There is a paucity of studies on the experience of home family caregivers of people with advanced cancer in the Asian region. The aim of this study was to describe the experiences of family caregivers caring for a person with advanced cancer at home in Singapore. This was a qualitative study; data were collected by semistructured interviews and analyzed using content analysis. A purposive sample of 19 family caregivers who were taking care of a family member with advanced cancer were recruited from home hospice care services in Singapore. Most of the caregivers were female (n = 14), ranging in age from 21 to 64 years (mean, 46.4 [SD, 10.5] years). Four themes were generated from the data: (1) caregiving challenges, (2) negative emotions, (3) ways of coping, and (4) positive gains of caregiving. This study generated insights into the challenges, emotions, and coping of Asian family caregivers caring for patients with advanced cancer. Such understanding could help in developing appropriate intervention for caregivers to reduce their burden and stress. Caregivers require knowledge on resolving family conflicts and about communicating and enhancing closeness with the ill family member. Support from healthcare professionals is essential even if caregivers have support from family members and friends; nurses can make conscious efforts to show concern for caregivers as well as for patients.
Buddeberg-Fischer, Barbara; Stamm, Martina; Buddeberg, Claus; Klaghofer, Richard
The present study aimed to investigate the differences between future family physicians, and physicians aspiring to other medical specialities, in terms of sociodemographic factors and variables concerning personality factors, career motivation, career success, importance of life goals and work-life balance; further, the stability in career choice of family physicians from medical school through to residency was evaluated. Data reported are from four assessments of the Swiss physicians' longitudinal career development study, begun in 2001 (T1). At T4, in 2007, 543 residents (76% of the initial sample at T1) completed a questionnaire concerning their personal and professional goals. The difference between family physicians and specialists was studied by multivariate analyses of covariance adjusted for gender. Of the study sample, 84 (17%) decided on family medicine, 66% of them as early as medical school or at the beginning of residency. Compared to specialists, more family physicians are married and more have children. Their intrinsic and extrinsic career motivation is lower, their extraprofessional concerns are greater and they rate their objective and subjective career success lower. The favoured models of work-family and work-life balance respectively are part-time oriented. Future family physicians, both females and males, are less career-oriented. The results suggest that the waning reputation of family medicine and the uncertain development of this medical discipline in the Swiss healthcare system attract less career-oriented applicants. A well-balanced integration of professional and private life is an essential goal for the new generation of doctors; this applies even more to female doctors and family physicians. Considering this trend, the question arises whether the current number of medical school graduates is sufficient to ensure the population's healthcare provision in the future.
Rafael Fabiano M. Rosa
Full Text Available OBJECTIVE: To describe gestational, perinatal and family findings of patients with Patau syndrome (PS. METHODS: The study enrolled patients with PS consecutively evaluated during 38 years in a Clinical Genetics Service of a pediatric referral hospital in Southern Brazil. The clinical data and the results of cytogenetic analysis were collected from the medical records. For statistical analysis, the two-tailed Fisher's exact test and the chi-square test with Yates' correction were used, being significant p<0.05. RESULTS: The sample was composed of 27 patients, 63% were male, with a median age of nine days at the first evaluation. Full trisomy of chromosome 13 was the main cytogenetic finding (74%. Only six patients were submitted to obstetric ultrasound and none had prenatal diagnosis of PS. The patients' demographic characteristics, compared to born alive infants in the same Brazilian state showed a higher frequency of: mothers with 35 years old or more (37.5%; multiparous mothers (92.6%; vaginal delivery (77%; preterm birth (34.6%; birth weight <2500g (33.3%, and Apgar scores <7 in the 1st (75% and in the 5th minute (42.9%. About half of them (53% died during the first month of life. CONCLUSIONS: The understanding of the PS patients' gestational, perinatal and family findings has important implications, especially on the decision about the actions to be taken in relation to the management of these patients.
Navarro-Main, Blanca; Castaño-León, Ana M; Munarriz, Pablo M; Gómez, Pedro A; Rios-Lago, Marcos; Lagares, Alfonso
Several studies have shown misconceptions about brain injury in different populations. The aim of this study was to assess the knowledge and perceptions about brain injury of family members of neurosurgical patients in our hospital. The participants (n=81) were relatives of patients admitted to the neurosurgery department between February and August 2016. They voluntarily completed a 19-item true-false format survey about brain injury based on a translation of other questionnaires used in previous studies from other countries (USA, Canada, UK, Ireland and New Zealand). Also, some sociodemographic data were collected (age, sex, education level and the patient's pathology). Data analysis was developed through graphical modelling with a regularisation parameter plotted on a network representing the association of the items of the questionnaire from the response pattern of participants. Data analysis showed two conceptual areas with a high rate of wrong answers: behaviour and management of patients, and expectations about acquired brain injury recovery. The results obtained in this study would enable us to objectify misconceptions about acquired brain injury in patients' relatives attended in the neurosurgery department. This lack of knowledge could be a great obstacle in patients' recovery process. Therefore, we suggest placing the emphasis on the provision of information on brain injury to patients' families, especially with regard to its symptoms and course of development. Copyright © 2017 Sociedad Española de Neurocirugía. Publicado por Elsevier España, S.L.U. All rights reserved.
Aguirre-Hernández, B.; Campos-Cantón, E.; López-Renteria, J.A.; Díaz González, E.C.
In this paper, we consider characteristic polynomials of n-dimensional systems that determine a segment of polynomials. One parameter is used to characterize this segment of polynomials in order to determine the maximal interval of dissipativity and unstability. Then we apply this result to the generation of a family of attractors based on a class of unstable dissipative systems (UDS) of type affine linear systems. This class of systems is comprised of switched linear systems yielding strange attractors. A family of these chaotic switched systems is determined by the maximal interval of perturbation of the matrix that governs the dynamics for still having scroll attractors
Margherita Di Salvo
Full Text Available This paper researches the ethnic language shift in two Italian communities in the UK, those in Bedford and Cambridge. It focuses mainly on Italians of first and second generation. The present study questions whether the loss of the ethnic language (Italian or an Italian dialect, can be very costly to the migrants and their families and what happens in family in which adults do not understand children and children do not understand adults and how, in these dynamics, Italian identity remains.
Yoshida, Saran; Shiozaki, Mariko; Sanjo, Makiko; Morita, Tatsuya; Hirai, Kei; Tsuneto, Satoru; Shima, Yasuo
The primary goals of this analysis were to explore the pros and cons of prognostic disclosure to patients and their families from the bereaved family's point of view. Semistructured interviews were conducted with 60 bereaved family members of patients with cancer in Japan. There were eight categories of influence related to the disclosure of prognosis to the family, including pros (e.g., "Enabling mental preparedness for the patient's death") and cons (e.g., "Being distressed by acknowledging the patient's prognosis"); and seven categories of influence of not disclosing the prognosis to family, including pros (e.g., "Being able to maintain hope") and cons (e.g., "Being prevented from providing adequate care for the patient"). There were also nine categories of influence related to the disclosure of prognosis to patients (e.g., "Enabling various discussions regarding death with the patient"), and eight categories of influence related to not disclosing the prognosis to patients (e.g., "Maintaining the patient's hope"). Although prognostic disclosure to family members can contribute to psychological distress and hopelessness, at the same time, it has the potential to prepare them for the future both emotionally and practically, and also to make the time until the patient's death as meaningful as possible. It is useful for physicians to introduce pros and cons of prognostic disclosure to family members at the time of decision making, to understand the family members' psychological state, and to provide support considering pros and cons whether or not they disclosed prognosis.
Full Text Available Jian-An Su,1–3,* Dah-Cherng Yeh,4,* Ching-Chi Chang,5,* Tzu-Chin Lin,6,7 Ching-Hsiang Lai,8 Pei-Yun Hu,8 Yi-Feng Ho,9 Vincent Chin-Hung Chen,1,2 Tsu-Nai Wang,10,11 Michael Gossop12 1Chang Gung Medical Foundation, Chiayi Chang Gung Memorial Hospital, Chiayi, Taiwan; 2Department of Medicine, School of Medicine, Chang Gung University, Taoyuan, Taiwan; 3Department of Nursing, Chang Gung Institute of Technology, Taoyuan, Taiwan; 4Department of Surgery, Taichung Tzu Chi Hospital, Buddhist Tzu Chi Medical Foundation, Taichung, Taiwan; 5Institute of Medicine, Chung Shan Medical University and Department of Psychiatry, Chung Shan Medical University Hospital, Taichung, Taiwan; 6Department of Psychiatry, Chung Shan Medical University Hospital, Taichung, Taiwan; 7Department of Psychiatry, School of Medicine, Chung Shan Medical University, Taichung, Taiwan; 8Department of Medical Informatics, Chung Shan Medical University, Taichung, Taiwan; 9Tsaotun Psychiatric Center, Ministry of Health and Welfare, Nan-Tou,Taiwan; 10Department of Public Health, College of Health Science, Kaohsiung Medical University, Kaohsiung, Taiwan; 11Center of Excellence for Environmental Medicine, Kaohsiung Medical University, Kaohsiung, Taiwan; 12King’s College London, Institute of Psychiatry, London, UK *These authors contributed equally to this work Background: Breast cancer is the most common cancer in women. Among the survivors, depression is one of the most common psychiatric comorbidities. This paper reports the point prevalence of major depressive disorder among breast cancer patients and the association between family support and major depressive disorder.Methods: Clinical data were collected from a breast cancer clinic of a general hospital in central Taiwan. Participants included 300 patients who were older than 18 years and diagnosed with breast cancer. Among these individuals, we used Mini International Neuropsychiatric Interview (a structural diagnostic tool for
Yurube, Takashi; Kakutani, Kenichiro; Okamoto, Koji; Manabe, Michihiko; Maeno, Koichiro; Yoshikawa, Masaho; Sha, Norihide; Kuroda, Ryosuke; Nishida, Kotaro
Spondylolysis is a major cause of back pain in children and adolescents. The prevalence of spondylolysis depends on the sex, race, and congenital abnormality. These biases suggest hereditary predisposition as an etiology of spondylolysis. However, no conclusive evidence still exists regarding the inheritance for spondylolysis. Herein, we report rare cases with familial occurrence of lumbar spondylolysis. In two generations of a Japanese family, three brothers including identical twins complained of back pain related to sports activities. Clinical, radiographic, and computed tomographic examinations identified spondylolysis at L4 and L5 in all these boys. The father experienced long-term back pain and had spondylolisthesis at L4-L5 and healed spondylolysis at L5. The daughter and mother did not show any lumbar spondylolysis. The frequent development of spondylolysis at L4, a rarely affected segment, in four of six family members (66.7%) support that lumbar spondylolysis has an underlying genetic etiology, primarily autosomal dominant inheritance.
Bruce, Christine A
In the grieving process, patient, family, and health professionals have the same needs-rest, relaxation, nourishment, a sense of security, trust, hope in the future, and humor among them. Grief, defined as a shared, universal, and natural neuropsychobiologic expression in response to loss, is distinct from mourning, a practice that varies in expression across diverse cultures. To aid in an understanding of grief and its effects, the author looks at the models for grief proposed by Kubler-Ross, Bowlby, Parkes, Worden, and Wolfelt. Addressing patients' concerns requires physicians be empathic, attentive, and respective and have willingness to take time, be present, and listen.
P S Shilpa
Full Text Available Dentinogenesis imperfect (DI is a hereditary dentine disorder affecting both deciduous and permanent teeth. DI is caused by mutations in genes encoding for type I collagen leading to discoloration of teeth. Shield around 30 years ago classified DI into 3 types (type I, II, and III. DI type I is associated with osteogenesis imperfect (OI, which is an inheritable disorder of connective tissue. Bone fragility and fracture of bone with minor trauma are hallmarks of this disorder. The objective of this article is to report and review a rare case of DI with OI affecting 4 generations of the family. Through this article, we intend to highlight genetic influence that affected a family for many generations, discuss the oral manifestations that can lead to the diagnosis of OI, and the importance of early diagnosis of OI.
Kühne, Franziska; Krattenmacher, Thomas; Bergelt, Corinna; Beierlein, Volker; Herzog, Wolfgang; V Klitzing, Kai; Weschenfelder-Stachwitz, Heike; Romer, Georg; Möller, Birgit
Adopting a systems approach, parental cancer has its impact on patients, spouses, and dependent children. The purpose of the current study was to examine family functioning dependent on parental disease stage and on family member perspective in families of cancer patients with adolescent children. The cross-sectional study was conducted within a German multisite research project of families before their first child-centered counseling encounter. The sample comprised individuals nested within N = 169 families. Analyses performed included analysis of covariance (ANCOVA) and intraclass correlation. Open answers were analyzed following quantitative content analysis procedures. Between 15% and 36% of family members reported dysfunctional general functioning scores. Parents indicated more dysfunctional scores on the Family Assessment Device scale Roles, and adolescents more dysfunctional Communication scores. Regarding assessment of family functioning, there was higher agreement in families with parents in a palliative situation. For adolescents with parents in palliation, incidents because of the disease tend to become more dominant, and spending time with the family tends to become even more important. As our study pointed out, parental cancer, and especially parental palliative disease, is associated with both perceived critical and positive aspects in family functioning. Supporting families in these concerns as well as encouraging perceptions of positive aspects are important components of psycho-oncological interventions for families with dependent children. PsycINFO Database Record (c) 2013 APA, all rights reserved.
Haryanto, Agus; Marotin, Fadli; Triyono, Sugeng; Hasanudin, Udin
The purpose of this study is to develop a family-size biogas-fueled electricity generating system consisting of anaerobic digester, bio-filter scrubber, and power generating engine. Biogas was produced from a pilot scale wet anaerobic digester (5-m3 capacity). The biogas was filtered using bio-scrubber column filled with locally made compost to reduce hydrogen sulfide (H2S) content. Biogas composition was analysed using a gas chromatograph and its H2S level was measured using a H2S detector. ...
Makola, Lehlogonolo; Mashegoane, Solomon; Debusho, Legesse K
South African nursing environments are marked by various incapacitating stressors. This study explores work-family (W-F) and family-work (F-W) conflicts as aspects of stress amongst nurses working with patients who have AIDS. The study sought to determine the value of W-F and F-W conflicts as predictors of work and family satisfaction, as well as turnover intentions and the moderating role of supervisor and significant other support, amongst nurses caring for patients with AIDS in public hospitals within the Capricorn and Mopani districts, Limpopo Province. The study used a cross-sectional design, with data collected at one point only. Ninety-one nursing staff provided the data for the study by completing structured, self-administered surveys. Analysis involved computing correlations of all study variables. Thereafter, associated variables were used as predictors. In each predictive analysis, the nurses' stress served as a control variable, W-F and F-W conflicts were the independent variables and significant others and supervisor supports were moderators. Interaction terms were derived from independent and moderator variables. Although the findings of the study were not generally supportive of the hypotheses advanced, they nevertheless showed, amongst other findings, that F-W conflict predicted work satisfaction whilst W-F conflict predicted turnover intentions. Moreover, significant other support had a direct effect on family satisfaction whilst supervisor support moderated reports of W-F conflict and experiences of work satisfaction. The study showed that inter-role models that appear to be established in the context of developed societies require some further investigations in South Africa.
Full Text Available Background: South African nursing environments are marked by various incapacitating stressors. This study explores work-family (W-F and family-work (F-W conflicts as aspects of stress amongst nurses working with patients who have AIDS. Objectives: The study sought to determine the value of W-F and F-W conflicts as predictors of work and family satisfaction, as well as turnover intentions and the moderating role of supervisor and significant other support, amongst nurses caring for patients with AIDS in public hospitals within the Capricorn and Mopani districts, Limpopo Province. Methods: The study used a cross-sectional design, with data collected at one point only. Ninety-one nursing staff provided the data for the study by completing structured, self-administered surveys. Analysis involved computing correlations of all study variables. Thereafter, associated variables were used as predictors. In each predictive analysis, the nurses’ stress served as a control variable, W-F and F-W conflicts were the independent variables and significant others and supervisor supports were moderators. Interaction terms were derived from independent and moderator variables. Results: Although the findings of the study were not generally supportive of the hypotheses advanced, they nevertheless showed, amongst other findings, that F-W conflict predicted work satisfaction whilst W-F conflict predicted turnover intentions. Moreover, significant other support had a direct effect on family satisfaction whilst supervisor support moderated reports of W-F conflict and experiences of work satisfaction. Conclusions: The study showed that inter-role models that appear to be established in the context of developed societies require some further investigations in South Africa.
Sanderson, Christine R; Cahill, Philippa J; Phillips, Jane L; Johnson, Anne; Lobb, Elizabeth A
Family meetings in palliative care can enhance communication with family members and identify unmet needs. However, the patient's voice may not be heard. This pre and post-test quality improvement project was conducted from 2013-2014 and investigated a patient-centered family meeting, which is a different approach to palliative care family meetings, to determine its feasibility and acceptability for patients, family and the palliative care team. Newly admitted patients to an Australian in-patient specialist palliative care unit were invited to ask anyone they wished to join them in a meeting with the palliative care team and to identify issues they wished to discuss. Consenting inpatients were interviewed shortly after admission; participated in a family meeting and re-interviewed 2-3 days after the meeting. Family members provided feedback at the end of the meeting. A focus group was held with staff for feedback on this new approach for family meetings. Meetings were observed, documented and thematically analyzed. Thirty-one newly admitted patients were approached to participate in a family meeting. Eighty-four percent had family meetings and the majority (96%) was attended by the patient. Thematic analysis revealed 69% of patient-centered meetings raised end-of-life concerns and 54% were "family-focused". Patient-centered family meetings in palliative care were shown to be feasible and acceptable for staff, patients and family members. Many patients and families spontaneously shared end-of-life concerns. A patient-centered approach to family meetings that includes active patient involvement may provide additional and valued opportunities for patients and families to: express mutual concerns, deliver messages of comfort and appreciation, and prepare for death. Further investigation of this approach, including families' bereavement outcomes, is warranted.
Pimlott Nicholas JG
Full Text Available Abstract Background Dizziness is a common complaint among the elderly with a prevalence of over 30% in people over the age of 65. Although it is a common problem the assessment and management of dizziness in the elderly is challenging for family physicians. There is little published research which assesses the quality of dizziness assessment and management by family physicians. Methods We conducted a retrospective, chart audit study of patients with dizziness attending the Sunnybrook Family Practice Center of Sunnybrook and Women's College Health Sciences Center (SWCHSC in Toronto. We audited a random sample of 50 charts of patients from 310 eligible charts. Quality indicators across all dizziness subtypes were assessed. These quality indicators included: onset and course of symptoms; symptoms in patients' own words; number of medications used; postural blood pressure changes; symptoms of depression or anxiety; falls; syncope; diagnosis; outcome; specialty referrals. Quality indicators specific to each dizziness subtype were also audited. Results 310 charts satisfied inclusion criteria with 20 charts excluded and 50 charts were randomly generated. Documentation of key quality indicators in the management of dizziness was sub-optimal. Charts documenting patients' dizziness symptoms in their own words were more likely to have a clinical diagnosis compared to charts without (P = 0.002. Conclusions Documentation of selected key quality indicators could be improved, especially that of patients' symptoms in their own words.
Full Text Available Abstract Introduction Tumoral calcinosis is a rare and benign condition characterized by massive subcutaneous soft tissue deposits of calcium phosphate predominantly around large joints. Case presentation Familial tumoral calcinosis was present in two members of a Han Chinese family, namely, the son and daughter. The 14-year-old son had the first operation on his right sole of the foot at the age of six, and then experienced subsequent surgeries at a lesion in his right sole of the foot and left hip, respectively. The 16-year-old daughter underwent her first operation at the age of six in her left gluteal region, and subsequent surgeries were performed due to recurrence at the same lesion. Pathologic diagnoses of surgical specimens in both of the patients were reported as tumoral calcinosis. The laboratory results showed hyperphosphatemia with normal levels of serum calcium and alkaline phosphatase. Only surgical treatment was performed in both patients with satisfactory prognosis. Conclusion This is the first report of Chinese familial tumoral calcinosis. The etiopathogenisis and treatment are discussed.
Tursunov, Olga; Cherny, Nathan I; Ganz, Freda DeKeyser
To describe the experience of family members of patients receiving palliative sedation at the initiation of treatment and after the patient has died and to compare these experiences over time. . Descriptive comparative study. . Oncology ward at Shaare Zedek Medical Center in Jerusalem, Israel. . A convenience sample of 34 family members of dying patients receiving palliative sedation. . A modified version of a questionnaire describing experiences of family members with palliative sedation was administered during palliative sedation and one to four months after the patient died. Descriptive statistics were used to describe the results of the questionnaire, and appropriate statistical analyses were conducted for comparisons over time. . Experiences of family members and time. . Most relatives were satisfied with the sedation and staff support. Palliative sedation was experienced as an ethical way to relieve suffering. However, one-third felt that it shortened the patient's life. An explanation of the treatment was given less than half of the time and was usually given on the same day treatment was started. This explanation was given by physicians and nurses. Many felt that they were not ready for changes in the patient's condition and wanted increased opportunities to discuss the treatment with oncology care providers. No statistically significant differences in experiences were found over time. . Relatives' experiences of palliative sedation were generally positive and stable over time. Important experiences included timing of the initiation of sedation, timing and quality of explanations, and communication. . Nurses should attempt to initiate discussions of the possible role of sedation in the event of refractory symptoms and follow through with continued discussions. The management of refractory symptoms at the end of life, the role of sedation, and communication skills associated with decision making related to palliative sedation should be a
Chartier, K G; Thomas, N S; Kendler, K S
Both a family history of alcoholism and migration-related factors like US v. foreign nativity increase the risk for developing alcohol use disorders in Hispanic Americans. For this study, we integrated these two lines of research to test whether the relationship between familial alcoholism and alcohol dependence changes with successive generations in the United States. Data were from the waves 1 and 2 National Epidemiologic Survey on Alcohol and Related Conditions (NESARC). Subjects self-identified Hispanic ethnicity (N = 4122; n = 1784 first, n = 1169 second, and n = 1169 third or later generation) and reported ever consuming ⩾12 drinks in a 1-year period. A family history of alcoholism was assessed in first- and second-degree relatives. Analyses predicting the number of alcohol dependence symptoms were path models. Alcohol dependence symptoms were associated with a stronger family history of alcoholism and later generational status. There was a significant interaction effect between familial alcoholism and generational status; the relationship of familial alcoholism with alcohol dependence symptoms increased significantly with successive generations in the United States, more strongly in women than men. Acculturation partially mediated the interaction effect between familial alcoholism and generational status on alcohol dependence, although not in the expected direction. Familial alcoholism interacted with generational status in predicting alcohol dependence symptoms in US Hispanic drinkers. This relationship suggests that heritability for alcoholism is influenced by a higher-order environmental factor, likely characterized by a relaxing of social restrictions on drinking.
Johanson, Linda S
Much has been written about teaching students of the Millennial Generation (those born between the years 1980 and 2000) and about intergenerational dynamics in the healthcare workforce. However, little can be found in the literature regarding generation-specific nursing care of Millennial patients. This article presents six categories of considerations for nurses caring for patients of the Millennial Generation based on the characteristics, attitudes, and values that have influenced them as well as the healthcare issues confronting this group of young adults. © 2016 Wiley Periodicals, Inc.
Cintia Hitomi Yamashita
Full Text Available Cross-sectional study that used the Social Network Index and the genogram to assess the social network of 110 family caregivers of dependent patients attended by a Home Care Service in São Paulo, Brazil. Data were analyzed using the test U of Mann-Whitney, Kruskal-Wallis and Spearman correlation. Results were considered statistically significant when p<0,05. Few caregivers participated in activities outside the home and the average number of people they had a bond was 4,4 relatives and 3,6 friends. Caregivers who reported pain and those who had a partner had higher average number of relatives who to trust. The average number of friends was higher in the group that reported use of medication for depression. Total and per capita incomes correlated with the social network. It was found that family members are the primary caregiver’s social network.
Fisher, Carla L; Ledford, Christy J W; Moss, David A; Crawford, Paul
Integrating complementary therapies (acupuncture) into conventional medicine has garnered recent support. Given the health benefits, low cost, and minimal risks, the military has advocated for acupuncture and begun training family medicine physicians. Little is known about the role of physician communication in patients' acupuncture engagement (uptake and adherence) in conventional medicine settings. We interviewed physicians (N = 15) and patients (N = 17) to capture physician communication they perceived affected treatment engagement. Data for each group were thematically analyzed. Physicians and patients prioritized different communication approaches and associated strategies. Physicians identified four approaches that enhance treatment engagement: (1) using shared decision-making (e.g., treatment options); (2) not being pushy (e.g., in tone); (3) carefully choosing language (e.g., Eastern versus Western terms); and (4) explaining treatment outcomes (e.g., efficacy). Patients also prioritized explaining treatment outcomes but differently (e.g., timing clarity), with two additional approaches: (5) talking with the same physician (e.g., continuity) and (6) being responsive to patient (e.g., flexibility). Findings highlight how physicians and patients prioritize patient-centered communication differently and how it is embedded within a unique, complex therapy. Data showcase authentic narratives that could be translated into physician communication skills training to promote treatment engagement in integrative care.
Sokolowski, Ineta; Kjeldgaard, Anette Hvenegaard; Olesen, Frede
Aims: We know that in Denmark some 90% of citizens have contact with family practice (FP) during a year and around 40% has contact with secondary care. This demands efforts to create integrated and shared care. The aim of this study is to document the pattern of contacts with FP among patients...... population b) about 33,000 patients diagnosed with cancer in 2007, and c) about 220,000 patients living with a previous diagnosis of cancer. Results: Data for the total population is known. The total number of contacts with FP in daytime is about 38.4 million, with out of hours service about 2...
E. V. Sukhova
Full Text Available A family is a social group that satisfies the most important needs and fulfils diverse functions. Patients with infiltrative pulmonary tuberculosis are not emotionally supported by their family members and hence experience anger and exasperation. The functioning of 30 families of patients with infiltrative pulmonary tuberculosis was psychologically studied using the family environment scale. The findings were compared with those of 100 standard families. Six out of 10 items showed significant differences, the other 4 items also displayed dissimilarities, but the latter were insignificant. The families of patients with pulmonary tuberculosis were dysfunctional. The social climate of the family had established well before infiltrative tuberculosis was diagnosed in its member. The dissimilarities from the standard families are due to the social characteristics of family members, such as low income, alcohol abuse, and imprisonment. The specific features of the social climate of a family provide an explanation for no moral support to the patient.
Portela Romero, Manuel; Bugarín González, Rosendo; Rodríguez Calvo, María Sol
To determine the views held by Family practice (FP) residents on the different dimensions of patient safety, in order to identify potential areas for improvement. A cross-sectional study. Seven FP of Galicia teaching units. 182 FP residents who completed the Medical Office Survey on Patient Safety Culture questionnaire. The Medical Office Survey on Patient Safety Culture questionnaire was chosen because it is translated, validated, and adapted to the Spanish model of Primary Care. The results were grouped into 12 composites assessed by the mentioned questionnaire. The study variables were the socio-demographic dimensions of the questionnaire, as well as occupational/professional variables: age, gender, year of residence, and teaching unit of FP of Galicia. The "Organisational learning" and "Teamwork" items were considered strong areas. However, the "Patient safety and quality issues", "Information exchange with other settings", and "Work pressure and pace" items were considered areas with significant potential for improvement. First-year residents obtained the best results and the fourth-year ones the worst. The results may indicate the need to include basic knowledge on patient safety in the teaching process of FP residents in order to increase and consolidate the fragile patient safety culture described in this study. Copyright © 2016 Elsevier España, S.L.U. All rights reserved.
Morris, Danielle H; Jones, Michael E; Schoemaker, Minouk J; Ashworth, Alan; Swerdlow, Anthony J
Existing estimates of the heritability of menopause age have a wide range. Furthermore, few studies have analyzed to what extent familial similarities might reflect shared environment, rather than shared genes. We therefore analyzed familial concordance for age at natural menopause and the effects of shared genetic and environmental factors on this concordance. Participants were 2,060 individuals comprising first-degree relatives, aged 31 to 90 years, and participating in the UK Breakthrough Generations Study. Menopause data were collected using a self-administered questionnaire and analyzed using logistic regression and variance-components models. Women were at an increased risk of early menopause (≤45 y) if their mother (odds ratio, 6.2; P menopause. Likewise, women had an increased risk of late menopause (≥54 y) if their relative had had a late menopause (mother: odds ratio, 6.1; P menopause age attributed to environmental factors shared by sisters. We confirm that early menopause aggregates within families and show, for the first time, that there is also strong familial concordance for late menopause. Both genes and shared environment were the source of variation in menopause age. Past heritability estimates have not accounted for shared environment, and thus, the effect of genetic variants on menopause age may previously have been overestimated.
Full Text Available Der Sammelband Generationen und Familien, welcher dem Soziologen Kurt Lüscher zum 70. Geburtstag gewidmet ist, stellt eine kritische Gegenwartsdiagnose des aktuellen Theorie- und Forschungsstandes zu diesem Thema dar. Schon in ihrem Vorwort machen die beiden Herausgeber auf die Diversität und den Facettenreichtum des Familien- und Generationenkonzeptes in modernen Gesellschaften aufmerksam: familiale Generationenbeziehungen werden in ganz unterschiedlicher Weise gelebt, und je nach theoretischer Lesart ergeben sich vielfältige Deutungsmuster. Die Beiträge nähern sich der Verflechtung von Familie, Generation und Gesellschaft sowohl in theoretischer als auch in empirischer Hinsicht. Inhaltlich reihen sie sich in drei übergeordnete Themenblöcke ein: „Generationen, Generationenverhältnisse und Generationenbeziehungen“, „Familie, Alltag und Identität“ und „Soziologie, Recht und Politik”.
Ayub, Emily M; Sampayo, Esther M; Shah, Manish I; Doughty, Cara B
A gap exists in understanding a provider's approach to delivering care that is mutually beneficial to patients, families, and other providers in the prehospital setting. The purpose of this study was to identify attitudes, beliefs, and perceived barriers to providing patient and family centered care (PFCC) in the prehospital setting and to describe potential solutions for improving PFCC during critical pediatric events. We conducted a qualitative, cross-sectional study of a purposive sample of Emergency Medical Technicians (EMTs) and paramedics from an urban, municipal, fire-based EMS system, who participated in the Pediatric Simulation Training for Emergency Prehospital Providers (PediSTEPPS) course. Two coders reviewed transcriptions of audio recordings from participants' first simulation scenario debriefings and performed constant comparison analysis to identify unifying themes. Themes were verified through member checking with two focus groups of prehospital providers. A total of 122 EMTs and paramedics participated in 16 audiotaped debriefing sessions and two focus groups. Four overarching themes emerged regarding the experience of PFCC by prehospital providers: (1) Perceived barriers included the prehospital environment, limited manpower, multi-tasking medical care, and concern for interference with patient care; (2) Providing emotional support comprised of empathetically comforting caregivers, maintaining a calm demeanor, and empowering families to feel involved; (3) Effective communication strategies consisted of designating a family point person, narration of actions, preempting the next steps, speaking in lay terms, summarizing during downtime, and conveying a positive first impression; (4) Tactics to overcome PFCC barriers were maintaining a line of sight, removing and returning a caregiver to and from the scene, and providing situational awareness. Based on debriefings from simulated scenarios, some prehospital providers identified the provision of
Kimura, Takuma; Imanaga, Teruhiko; Matsuzaki, Makoto
Promotion of home medical care is absolutely necessary in Japan where is a rapidly aging society. In home medical care settings, triadic communications among the doctor, patient and the family are common. And "communications just between the doctor and the patient without the family" (doctor-patient communication without family, "DPC without family") is considered important for the patient to frankly communicate with the doctor without consideration for the family. However, the circumstances associated with DPC without family are unclear. Therefore, to identify the factors of the occurrence of DPC without family, we conducted a cross-sectional mail-in survey targeting 271 families of Japanese patients who had previously received home medical care. Among 227 respondents (83.8%), we eventually analyzed data from 143, excluding families of patients with severe hearing or cognitive impairment and severe verbal communication dysfunction. DPC without family occurred in 26.6% (n = 38) of the families analyzed. A multivariable logistic regression analysis was performed using a model including Primary disease, Daily activity, Duration of home medical care, Interval between doctor visits, Duration of doctor's stay, Existence of another room, and Spouse as primary caregiver. As a result, DPC without family was significantly associated with malignant tumor as primary disease (OR, 3.165; 95% CI, 1.180-8.486; P = 0.022). In conclusion, the visiting doctors should bear in mind that the background factor of the occurrence of DPC without family is patient's malignant tumors.
Full Text Available "Why do parents parent the way they do?" is a very important question. The aim of the current research is to study whether and to what extent the way parents have been parented influences the way they parent. Original data were collected from 48 families across three generations. Grandparents, parents and young adults were asked to report on how they had been parented, how they themselves had parented in the case of the grandparents' and parents' generations, or how they were planning to parent in the case of young adults without children. We tested the hypothesis of a "childrearing tradition" across three generations of respondents in a cross-sectional study with a non-clinical sample. Some arguments in favour of continuities have been found, in particular for supportive rather than for controlling parenting. The results hence suggest that reports on parenting behaviour correlate from one generation to the next and even across two non-consecutive generations. The similarities that have been displayed result from the influence of the parenting individuals have received on the way they themselves parent. Our results also suggest that such an influence may be higher for childrearing attitudes such as warmth that have consistently been regarded as desirable, than for those that have been regarded as more controversial in society, such as harsh discipline.
Full Text Available The article deals with the issue of relationships among contemporary generations. It is devoted to the specific communication and relationships development between today's children and their grandparents. What is the role played by grandparents in lives of their grandchildren? Is the generation gap so powerful to destroy the traditionally strong relationships in families? Our text stresses the importance of an intergenerational socializations influence and its positives for individuals and the whole family system. The article is based on the empirical survey among the 202 respondents in the age group 12–17. The data tried to show that there are differences in relationships in families where the generations are living together and the families with separate living of generations. However, this presumption was not confirmed and our data show that there is no difference in frequency and quality of relationships between both groups of families. The important question is, if the face-to-face communication has been replaced by other means of communication, especially through modern media, or not. The data show the intensity and content of intergenerational meeting in family. It brings some view on the attitudes of young Czech people towards their grandparents. The results show the mostly positive intergenerational relationships and the value of older generations for young people. Interesting are expressions of appreciation of grandmothers and grandfathers from their grandchildren. The relationships to grandparents are mostly influenced by the whole family climate and are closely connected with the parental attitudes toward the older generations.
Dieperink, Karin B; Coyne, Elisabeth; Creedy, Debra K
such as cancer. However, family functioning and supportive care from nurses may vary across cultures and settings. DESIGN AND METHODS: A descriptive, cross sectional comparative design with patients and family members from Denmark and Australia. Participants were asked to fill in translated versions...
Tresch, D D; Sims, F H; Duthie, E H; Goldstein, M D
Patients in a persistent vegetative state (PVS) constituted approximately 3% of the population in four Milwaukee nursing homes. In order to understand family members' attitudes and reactions toward such patients, 33 (92%) of 36 family members of patients in PVS contacted were studied. The age of the patients ranged from 19 to 95 with a mean age of 73.4 +/- 17.2 years, and family members' ages ranged from 41 to 89 with a mean age of 61.8 +/- 3.3 years. The etiology of the PVS varied from dementia to cerebral trauma. The mean duration of the PVS was 54 +/- 8.4 months (range 12 to 204). Family members reported that they visited patients 260 times during the first year following the onset of the PVS and were still visiting at a rate of 209 visits yearly at the time of the interview. There was no significant correlation between the frequency of the family members visits and the duration of the PVS, the patient's or family member's age, or the family member's relationship to the patient. Ninety percent of patients were considered by family members to have some awareness of pain, light or darkness, environment, taste, verbal conversation, or the family member's presence. Most family members thought they understood the patient's medical condition, and the majority did not expect the patient to improve. Nevertheless, the majority of family members wanted the patient to undergo therapeutic interventions, including transfer to the acute hospital and surgery.(ABSTRACT TRUNCATED AT 250 WORDS)
Segev, Einav; Levinger, Miriam; Hochman, Yael
This qualitative research focused on the relationships between family members of patients with acquired brain injury (ABI). The aim was to explore the dynamics between caregivers of the family member with a brain injury during rehabilitation hospitalization, and the relationships between them and the rest of the extended family. Twenty semistructured interviews were conducted with family members. In each family, the spouse of the patient and another family member involved in caregiving were interviewed. The importance of the relationships between family members during rehabilitation hospitalization justifies the examination undertaken in this research. Findings point at the change that took place in the relationships between family members because of the need to cope with a relative's injury. It is possible that direct intervention in the dynamics of the relationship, especially between the family of origin and the nuclear family of the injured person, can benefit extended families in coping with the crisis.
Full Text Available Considering that mutations in known prostate cancer (PrCa predisposition genes, including those responsible for hereditary breast/ovarian cancer and Lynch syndromes, explain less than 5% of early-onset/familial PrCa, we have sequenced 94 genes associated with cancer predisposition using next generation sequencing (NGS in a series of 121 PrCa patients. We found monoallelic truncating/functionally deleterious mutations in seven genes, including ATM and CHEK2, which have previously been associated with PrCa predisposition, and five new candidate PrCa associated genes involved in cancer predisposing recessive disorders, namely RAD51C, FANCD2, FANCI, CEP57 and RECQL4. Furthermore, using in silico pathogenicity prediction of missense variants among 18 genes associated with breast/ovarian cancer and/or Lynch syndrome, followed by KASP genotyping in 710 healthy controls, we identified "likely pathogenic" missense variants in ATM, BRIP1, CHEK2 and TP53. In conclusion, this study has identified putative PrCa predisposing germline mutations in 14.9% of early-onset/familial PrCa patients. Further data will be necessary to confirm the genetic heterogeneity of inherited PrCa predisposition hinted in this study.
Foley, Geraldine; Hynes, Geralyn
Practice guidelines in ALS care emphasise the role of the patient and their family in the decision-making process. We aimed to examine the ALS patient/family relationship in the decision-making process and to ascertain how patients and their family can shape one another's decisions pertaining to care. We conducted a review of peer-reviewed empirical research, published in full and in English between January 2007 and January 2017, relating to care decision-making among ALS patients and their family. Database sources included: Medline; CINAHL; AMED; PsycINFO; PsycARTICLES; and Social Sciences Full Text. A narrative synthesis was undertaken. Forty-seven studies from the empirical literature were extracted. The family viewpoint was captured primarily from family members with direct care-giving duties. Patients' cognitive status was not routinely assessed. The findings revealed that the decision-making process in ALS care can be contoured by patients' and family caregivers' perceived responsibilities to one another and to the wider family. Greater attention to family member roles beyond the primary caregiver role is needed. Strategies that integrate cognitively-impaired patients into the family decision-making process require investigation. Identification of the domains in which ALS patients and their family members support one another in the decision-making process could facilitate the development of patient/family decision-making tools in ALS care.
Berlow, Noah; Pal, Ranadip
Genetic Regulatory Networks (GRNs) are frequently modeled as Markov Chains providing the transition probabilities of moving from one state of the network to another. The inverse problem of inference of the Markov Chain from noisy and limited experimental data is an ill posed problem and often generates multiple model possibilities instead of a unique one. In this article, we address the issue of intervention in a genetic regulatory network represented by a family of Markov Chains. The purpose of intervention is to alter the steady state probability distribution of the GRN as the steady states are considered to be representative of the phenotypes. We consider robust stationary control policies with best expected behavior. The extreme computational complexity involved in search of robust stationary control policies is mitigated by using a sequential approach to control policy generation and utilizing computationally efficient techniques for updating the stationary probability distribution of a Markov chain following a rank one perturbation.
Wouters, Roel H P; Bijlsma, Rhodé M; Ausems, Margreet G E M; van Delden, Johannes J M; Voest, Emile E; Bredenoord, Annelien L
Ever since genetic testing is possible for specific mutations, ethical debate has sparked on the question of whether professionals have a duty to warn not only patients but also their relatives that might be at risk for hereditary diseases. As next generation sequencing swiftly finds its way into
Sepúlveda, Ana R; Anastasiadou, Dimitra; Rodríguez, Laura; Almendros, Carmen; Andrés, Patricia; Vaz, Francisco; Graell, Montserrat
The objective of this study is to evaluate the psychometric properties of the Spanish version of the Family Questionnaire (FQ) and to further examine the differences between mothers' and fathers' emotional response to an eating disorder (ED). A total of 382 carers of patients with an ED participated in the study, with ages ranging from forty to fifty-three years old. The use of confirmatory factor analysis according to gender supported both factor models of the FQ, with only minor differences in comparison to the original study performed in 2002 by Wiedemann and collegues. The internal consistency of the Spanish version of the FQ was good. Mothers displayed significantly higher levels of emotional over-involvement than fathers, while gender differences in critical comments were nonsignificant. The correlation of the two subscales of the FQ with a conceptually related measure (Expressed Emotion) and two unrelated ones (negative caregiving experience, distress) supports the convergent and concurrent validity of the instrument in both samples. The FQ has adequate psychometric properties and may be of value in assessing the impact of ED symptoms on the family environment. Finally, interventions that aim to reduce Expressed Emotion in carers may consider a gender-specific approach.
Caridi, Gianluca; Malaventura, Cristina; Dagnino, Monica; Leonardi, Emanuela; Artifoni, Lina; Ghiggeri, Gian Marco; Tosatto, Silvio C.E.; Murer, Luisa
Background and objectives: Wilms tumor-suppressor gene-1 (WT1) plays a key role in kidney development and function. WT1 mutations usually occur in exons 8 and 9 and are associated with Denys-Drash, or in intron 9 and are associated with Frasier syndrome. However, overlapping clinical and molecular features have been reported. Few familial cases have been described, with intrafamilial variability. Sporadic cases of WT1 mutations in isolated diffuse mesangial sclerosis or focal segmental glomerulosclerosis have also been reported. Design, setting, participants, & measurements: Molecular analysis of WT1 exons 8 and 9 was carried out in five members on three generations of a family with late-onset isolated proteinuria. The effect of the detected amino acid substitution on WT1 protein's structure was studied by bioinformatics tools. Results: Three family members reached end-stage renal disease in full adulthood. None had genital abnormalities or Wilms tumor. Histologic analysis in two subjects revealed focal segmental glomerulosclerosis. The novel sequence variant c.1208G>A in WT1 exon 9 was identified in all of the affected members of the family. Conclusions: The lack of Wilms tumor or other related phenotypes suggests the expansion of WT1 gene analysis in patients with focal segmental glomerulosclerosis, regardless of age or presence of typical Denys-Drash or Frasier syndrome clinical features. Structural analysis of the mutated protein revealed that the mutation hampers zinc finger-DNA interactions, impairing target gene transcription. This finding opens up new issues about WT1 function in the maintenance of the complex gene network that regulates normal podocyte function. PMID:20150449
Vousoura, Eleni; Verdeli, Helen; Warner, Virginia; Wickramaratne, Priya; Baily, Charles David Richard
Research suggests a link between parental divorce and negative child outcomes; however, the presence of parental depression may confound this relationship. Studies exploring the simultaneous effects of depression and parents' divorce on the adjustment of their children are scarce and rarely have a longitudinal design. This is the first three-generation study of the relative effects of depression and divorce on offspring psychopathology, based on data from a 25-year longitudinal study with families at high and low risk for depression. One hundred seventy-eight grandchildren (mean age = 13.9 years) of depressed and nondepressed parents and grandparents were evaluated by raters blind to their parents' and grandparents' clinical status. We found that in both low and high-risk children, divorce had a limited impact on child adjustment over and above familial risk for depression. Divorce had a significant effect on child outcomes only among high-risk grandchildren with a depressed grandparent and non-depressed parents, with this group showing a threefold risk for anxiety disorders. Results support previous findings suggesting that familial risk for depression largely overshadows the effect of parental divorce on child psychopathology. Possible reasons for the lack of association between divorce and child psychopathology among low-risk offspring are discussed.
Larsen, Christian Grønhøj; Gyldenløve, Mette; Jønch, Aia Elise
Idiopathic facial palsy (IFP), also known as Bell's palsy, is a common neurologic disorder, but recurrent and familial forms are rare. This case series presents a three-generation family with idiopathic facial palsy. The mode of inheritance of IFP has previously been suggested as autosomal dominant...
Safarova, Maya S.; Kullo, Iftikhar J.
Familial hypercholesterolemia (FH), a relatively common Mendelian genetic disorder, is associated with a dramatically increased lifetime risk of premature atherosclerotic cardiovascular disease due to elevated plasma low-density lipoprotein cholesterol (LDL-C) levels. The diagnosis of FH is based on clinical presentation or genetic testing. Early identification of patients with FH is of great public health importance because preventive strategies can lower the absolute lifetime cardiovascular risk and screening can detect affected relatives. However, low awareness, detection, and control of FH pose hurdles in the prevention of FH-related cardiovascular events. Of the estimated 0.65 million to 1 million patients with FH in the United States, less than 10% carry a diagnosis of FH. Based on registry data, a substantial proportion of patients with FH are receiving no or inadequate lipid-lowering therapy. Statins remain the mainstay of treatment for patients with FH. Lipoprotein apheresis and newly approved lipid-lowering drugs are valuable adjuncts to statin therapy, particularly when the LDL-C–lowering response is suboptimal. Monoclonal antibodies targeting proprotein convertase subtilisin/kexin type 9 provide an additional approximately 60% lowering of LDL-C levels and are approved for use in patients with FH. For homozygous FH, 2 new drugs that work independent of the LDL receptor pathway are available: an apolipoprotein B antisense oligonucleotide (mipomersen) and a microsomal triglyceride transfer protein inhibitor (lomitapide). This review attempts to critically examine the available data to provide a summary of the current evidence for managing patients with FH, including screening, diagnosis, treatment, and surveillance. PMID:27261867
Essau, Cecilia A; Ishikawa, Shin-Ichi; Sasagawa, Satoko; Otsui, Kanako; Sato, Hiroshi; Okajima, Isa; Georgiou, George A; O'Callaghan, Jean; Bray, Diane
The main aims of the present study were to compare the frequency and correlates of psychopathological symptoms in two generations of the same family in Japan and in England. The sample included 689 adolescents and one of their parents/guardians. All participants completed a set of questionnaires to measure psychopathological symptoms, self-construals, and perceived social support. In both parent and adolescent data, the Japanese sample reported significantly lower psychopathological symptoms than the English sample. The relationship between parental and adolescent psychopathology was significant in England, but not in Japan. In both countries, perceived social support and independent self-construal were generally associated with less psychopathological symptoms, and interdependent self-construal was associated with more symptoms. Additionally, in England, a significant interaction effect was found between social support and the self-construals. Participants with low independent and high interdependent self-construal had elevated levels of psychopathological symptoms when perceived social support was low. The present study illustrates the importance of culture in the transmission of psychopathological symptoms across different generations in the same family.
Yoo, Grace J; Kim, Barbara W
Korean immigration peaked in the mid-1980s, so that large cohorts of post-1965 immigrants are now approaching or entering retirement. As the baby boomer generation ages, few studies have examined how the lack of retirement savings and eldercare plans combined with cultural expectations such as filial piety may pose challenges for aging Korean immigrants and their adult children. This exploratory study examines attitudes and beliefs among 1.5 and 2nd generation Korean American adults regarding filial expectations and support for aging immigrant parents. In-depth interviews conducted with 124 adult children of immigrants show that their attitudes and beliefs around filial care were primarily motivated by feelings of gratitude and a strong sense of responsibility toward their parents. In addition, because Korean immigrant parents often face language and financial barriers, adult children were preparing themselves for future support of their parents' finances, health care and long-term care needs. Although both adult sons and daughters expressed a desire to care for their parents, adult daughters often discussed in detail their concerns and worries about future care of their parents. The findings of this paper illustrate how the intersections of gender, culture, and class inform attitudes and beliefs regarding aging and family support among Korean American families.
Cutilli, Carolyn Crane
Healthcare professionals teach patients and families about their health every day. Regulatory and accreditation organizations mandate patient and family education to promote better health outcomes. And recently, financial rewards for healthcare organizations are being tied to patient satisfaction (Hospital Consumer Assessment of Healthcare Providers and Systems-HCAHPS). A University of Pennsylvania Health System group of staff and patients, devoted to excellence in patient and family education, developed the graphic "R.E.A.C.H. to Teach." The purpose of the graphic is to make evidence-based practice (EBP) for patient and family education "stick" with staff. The group used concepts from the marketing book, Made to Stick, to demonstrate how to develop effective staff and patient and family education. Ideas (education) that survive ("stick") have the following attributes: simple, unexpected, concrete, credible, emotional, and narrative (story). This article demonstrates how to apply these principles and EBP to patient and family education.
Haubek, Dorte; Gjørup, Hans; Jensen, Lillian G; Juncker, Inger; Nyegaard, Mette; Børglum, Anders D; Poulsen, Sven; Hertz, Jens M
BACKGROUND. Autosomal dominant hypocalcified amelogenesis imperfecta (ADHCAI) is a disease with severe dental manifestations. OBJECTIVES. The aims were by means of a genome-wide linkage scan to search for the gene underlying the ADHCAI phenotype in a Danish five-generation family and to study the phenotypic variation of the enamel in affected family members. RESULTS. Significant linkage was found to a locus at chromosome 8q24.3 comprising the gene FAM83H identified to be responsible for ADHCAI in other families. Subsequent sequencing of FAM83H in affected family members revealed a novel nonsense mutation, p.Y302X. Limited phenotypic variation was found among affected family members with loss of translucency and discoloration of the enamel. Extensive posteruptive loss of enamel was found in all teeth of affected subjects. The tip of the cusps on the premolars and molars and a zone along the gingival margin seemed resistant to posteruptive loss of enamel. We have screened FAM83H in another five unrelated Danish patients with a phenotype of ADHCAI similar to that in the five-generation family, and identified a de novo FAM83H nonsense mutation, p.Q452X in one of these patients. CONCLUSION. We have identified a FAM83H mutation in two of six unrelated families with ADHCAI and found limited phenotypic variation of the enamel in these patients. © 2011 The Authors. International Journal of Paediatric Dentistry © 2011 BSPD, IAPD and Blackwell Publishing Ltd.
Mala, Sankeerti; Rathod, Vanita; Pundir, Siddharth; Dixit, Sudhanshu
The unique pattern and structural diversity of fingerprints, lip prints, palatal rugae, and their occurrence in different patterns among individuals make it questionable whether they are completely unique even in a family hierarchy? Do they have any repetition of the patterns among the generations? Or is this a mere chaos theory? The present study aims to assess the pattern self-repetition of fingerprints, lip prints, and palatal rugae among three generations of ten different families. The present study was conducted at Rungta College of Dental Science and Research, Bhilai, India. Participants birth by origin of Chhattisgarh were only included in the study. Thirty participants from three consecutive generations of ten different families were briefed about the purpose of the study, and their fingerprints, lip prints, and palatal rugae impression were recorded and analyzed for the pattern of self-repetition. Multiple comparisons among the generations and one-way analysis of variance test were performed using SPSS 20 trial version. Among the pattern of primary palatal rugae, 10% showed repetition in all the three generations. Thirty percent showed repetition of the pattern of thumb fingerprints in all the three generation. The pattern of lip prints in the middle 1/3 rd of lower lip, 20% showed repetition in alternative generations. The evaluations of fingerprints, lip prints, and palatal rugae showed fractal dimensions, occurring variations in dimensions according to the complexity of each structure. Even though a minute self-repetition in the patterns of lip, thumb, and palate among the three consequent generations in a family was observed considering the sample size, these results need to be confirmed in a larger sample, either to establish the role of chaos theory in forensic science or identifying a particular pattern of the individual in his family hierarchy.
Sottile, Peter D; Nordon-Craft, Amy; Malone, Daniel; Schenkman, Margaret; Moss, Marc
Patient and family member perceptions of physical therapy (PT) in the intensive care unit and the factors that influence their degree of satisfaction have not been described. A panel of experts developed a questionnaire that assessed patient and family perceptions of PT. Critically ill patients and their family members were asked to complete the survey. Patient and family member scores were compared and stratified by age, sex, and mechanical ventilation for greater than 14 days compared to 14 days or less. A total of 55 patients and 49 family members completed the survey. Patients and family members reported that PT was necessary and beneficial to recovery, despite associating PT with difficulty, exertion, and discomfort. Patient perceptions were similar regardless of age or sex. Family members underestimated a patient's enjoyment of PT (P = .03). For individuals who required prolonged mechanical ventilation (>14 days), patients reported that PT was more difficult (P = .03) and less enjoyable (P = .049), and family members reported PT as causing greater discomfort (P = .005). In addition, family members of patients who required prolonged mechanical ventilation felt that PT was less beneficial (P = .01). Physical therapy is perceived as necessary and beneficial to recovery by critically ill patients and family members. Copyright © 2015 Elsevier Inc. All rights reserved.
Objective: Establish the reliability of the scored Patient Generated-Subjective Global Assessment (PG-SGA) in determining nutritional status among Antiretroviral Therapy (ART) naive HIV-infected adults. Methods: A descriptive, cross sectional study among outpatient medical clinics, in The AIDS Support Organization ...
Full Text Available In functional metagenomics, BLAST homology search is a common method to classify metagenomic reads into protein/domain sequence families such as Clusters of Orthologous Groups of proteins (COGs in order to quantify the abundance of each COG in the community. The resulting functional profile of the community is then used in downstream analysis to correlate the change in abundance to environmental perturbation, clinical variation, and so on. However, the short read length coupled with next-generation sequencing technologies poses a barrier in this approach, essentially because similarity significance cannot be discerned by searching with short reads. Consequently, artificial functional families are produced, in which those with a large number of reads assigned decreases the accuracy of functional profile dramatically. There is no method available to address this problem. We intended to fill this gap in this paper. We revealed that BLAST similarity scores of homologues for short reads from COG protein members coding sequences are distributed differently from the scores of those derived elsewhere. We showed that, by choosing an appropriate score cut-off, we are able to filter out most artificial families and simultaneously to preserve sufficient information in order to build the functional profile. We also showed that, by incorporated application of BLAST and RPS-BLAST, some artificial families with large read counts can be further identified after the score cutoff filtration. Evaluated on three experimental metagenomic datasets with different coverages, we found that the proposed method is robust against read coverage and consistently outperforms the other E-value cutoff methods currently used in literatures.
Boyd, Jamie M; Burton, Rachael; Butler, Barb L; Dyer, Dianne; Evans, David C; Felteau, Melissa; Gruen, Russell L; Jaffe, Kenneth M; Kortbeek, John; Lang, Eddy; Lougheed, Val; Moore, Lynne; Narciso, Michelle; Oxland, Peter; Rivara, Frederick P; Roberts, Derek; Sarakbi, Diana; Vine, Karen; Stelfox, Henry T
The aim of this study was to develop and evaluate the content validity of quality criteria for providing patient- and family-centered injury care. Quality criteria have been developed for clinical injury care, but not patient- and family-centered injury care. Using a modified Research AND Development Corporation (RAND)/University of California, Los Angeles (UCLA) Appropriateness Methodology, a panel of 16 patients, family members, injury and quality of care experts serially rated and revised criteria for patient- and family-centered injury care identified from patient and family focus groups. The criteria were then sent to 384 verified trauma centers in the United States, Canada, Australia, and New Zealand for evaluation. A total of 46 criteria were rated and revised by the panel over 4 rounds of review producing 14 criteria related to clinical care (n = 4; transitions of care, pain management, patient safety, provider competence), communication (n = 3; information for patients/families; communication of discharge plans to patients/families, communication between hospital and community providers), holistic care (n = 4; patient hygiene, kindness and respect, family access to patient, social and spiritual support) and end-of-life care (n = 3; decision making, end-of-life care, family follow-up). Medical directors, managers, or coordinators representing 254 trauma centers (66% response rate) rated 12 criteria to be important (95% of responses) for patient- and family-centered injury care. Fewer centers rated family access to the patient (80%) and family follow-up after patient death (65%) to be important criteria. Fourteen-candidate quality criteria for patient- and family-centered injury care were developed and shown to have content validity. These may be used to guide quality improvement practices.
Renata Rego Lins Fumis
Full Text Available INTRODUCTION: Patients and family members undergo different experiences of suffering from emotional disorders during ICU stay and after ICU discharge. The purpose of this study was to compare the incidence of anxiety, depression and post-traumatic stress disorder (PTSD symptoms in pairs (patient and respective family member, during stay at an open visit ICU and at 30 and 90-days post-ICU discharge. We hypothesized that there was a positive correlation with the severity of symptoms among pairs and different patterns of suffering over time. METHODS: A prospective study was conducted in a 22-bed adult general ICU including patients with >48 hours stay. The Hospital Anxiety and Depression Scale (HADS was completed by the pairs (patients/respective family member. Interviews were made by phone at 30 and 90-days post-ICU discharge using the Impact of Event Scale (IES and the HADS. Multivariate models were constructed to predict IES score at 30 days for patients and family members. RESULTS: Four hundred and seventy one family members and 289 patients were interviewed in the ICU forming 184 pairs for analysis. Regarding HADS score, patients presented less symptoms than family members of patients who survived and who deceased at 30 and 90-days (p<0.001. However, family members of patients who deceased scored higher anxiety and depression symptoms (p = 0.048 at 90-days when compared with family members of patients who survived. Patients and family members at 30-days had a similar IES score, but it was higher in family members at 90-days (p = 0.019. For both family members and patients, age and symptoms of anxiety and depression during ICU were the major determinants for PTSD at 30-days. CONCLUSIONS: Anxiety, depression and PTSD symptoms were higher in family members than in the patients. Furthermore, these symptoms in family members persisted at 3 months, while they decreased in patients.
Full Text Available Der Sammelband Generationen und Familien, welcher dem Soziologen Kurt Lüscher zum 70. Geburtstag gewidmet ist, stellt eine kritische Gegenwartsdiagnose des aktuellen Theorie- und Forschungsstandes zu diesem Thema dar. Schon in ihrem Vorwort machen die beiden Herausgeber auf die Diversität und den Facettenreichtum des Familien- und Generationenkonzeptes in modernen Gesellschaften aufmerksam: familiale Generationenbeziehungen werden in ganz unterschiedlicher Weise gelebt, und je nach theoretischer Lesart ergeben sich vielfältige Deutungsmuster. Die Beiträge nähern sich der Verflechtung von Familie, Generation und Gesellschaft sowohl in theoretischer als auch in empirischer Hinsicht. Inhaltlich reihen sie sich in drei übergeordnete Themenblöcke ein: „Generationen, Generationenverhältnisse und Generationenbeziehungen“, „Familie, Alltag und Identität“ und „Soziologie, Recht und Politik”.The collected volume Generationen und Familien, which is dedicated to the sociologist Kurt Lüscher on his 70th birthday, presents a critical diagnosis of the current state of theory and research on this theme. The editors point to the diversity and multi-structural nature of the concept of family and generation in their forward to the volume: Familial relations between generations are experienced in very different ways and, depending upon the theoretical reading, they provide multiple patterns for interpretation. The contributions approach the linkage between family, generation, and society in a theoretical and an empirical manner. The contents can be divided into three general thematic blocks: “Generation, generational relations, and generational relationships,” “family, daily life, and identity,” and “sociology, law, and politics.”
PURPOSE: We describe the anaesthetic management of a patient with the autosomal dominant inherited disease, normokalaemic periodic paralysis. The disease results in intermittent bouts of limb and respiratory muscular weakness in association with hypothermia, stress, prolonged fasting or exercise. Unlike hypokalaemic and hyperkalaemic periodic paralysis, the more common variants of the disease, normokalaemic periodic paralysis is not accompanied by alterations in the plasma potassium concentration. CLINICAL FEATURES: A five-year-old boy presented for emergency scrotal exploration. He had a family history of periodic paralysis and had experienced previous episodes of weakness, two of which had required hospitalization for respiratory distress. On admission there was no evidence of weakness and serum potassium concentration was 4.2 mMol.L-1. A spinal anaesthetic was performed and the procedure was uncomplicated by muscle paralysis above the level of the spinal block. CONCLUSION: Avoidance of known precipitating factors and judicious use of neuromuscular blocking drugs has been advocated in patients with this disorder presenting for surgery. In appropriate circumstances, spinal anaesthesia represents a useful option in patients with normokalaemic periodic paralysis.
Sateesh R Koujalgi; Raghavendra B Nayak; Adithya A Pandurangi; Nanasahed M Patil
Background: Psychological disorders can have a direct impact on family functioning. Family dysfunction is an indirect factor leading to the relapse of psychological disorders. Literature on family dysfunction in anxiety disorder is limited. Role of family and its functioning in obsessive-compulsive disorder (OCD) may help in better understanding of the role of social factors in OCD. Aim: The aim was to compare family functions in patients with OCD and compare with controls. Materials and Meth...
Sinožić, T; Katić, M; Kovačević, J
satisfaction with the results achieved. Family doctors are involved in the care of chronic wound patients as part of the multidisciplinary team of experts. Additional specific knowledge and skills are required for such care in order to ensure overall quality care as a supplement of the existing knowledge, skills and working experience in family medicine.
Raquel Nichele de Chaves
Full Text Available This study aims (1 to investigate the presence of familial aggregation in physical activity (PA levels and sedentary behavior (SB among members of three generations families and (2 to estimate the magnitude of additive genetic influences on PA and SB phenotypes. The sample consisted of 100 extended families covering three generations (n=1034, from the Lisbon area, Portugal. Phenotypes were assessed via the short version of the self-administered International Physical Activity Questionnaire (IPAQ-SF. Measured phenotypes: total physical activity (TPA; vigorous (VPA; moderate (MPA; walking; time spent in sitting time (ST, watching television (WT and PA levels classification. Body mass index (BMI was calculated. Exploratory family analysis in all phenotypes was conducted in PEDSTATS software. The genetic component (h2 and shared environmental effect were estimated using maximum likelihood implemented in the SOLAR software package. All graphs were done in HLM software. Sex, age, sex*age, age2, sex*age2 and BMI were used as covariates. Significant level was set at 0,05. Genetic component estimates (h2 were as follows: TPA h2=0,28±0,06 (p<0.0001; VPA h2=0,35±0,06 (p<0.0001; MPA h2=0,29±0,06 (p<0.0001; walking h2=0,40±0,06 (p<0.0001; ST h2=0,29±0,06 (p<0.0001; WT h2=0,15±0,06 (p<0.003 and determination of the level physical activity h2=0,35±0,14 (p<0.007. Shared environmental effect was not significant. These results showed a low-to-moderate genetic contribution, between 15% to 40% of the total variability, in the PA and SB phenotypes. The genetic factors have low to moderate influence in this sample. Non-shared environmental factors appear to have the major contribution in these phenotypes.
Ralston Stuart H
Full Text Available Abstract Background Generation Scotland: the Scottish Family Health Study aims to identify genetic variants accounting for variation in levels of quantitative traits underlying the major common complex diseases (such as cardiovascular disease, cognitive decline, mental illness in Scotland. Methods/Design Generation Scotland will recruit a family-based cohort of up to 50,000 individuals (comprising siblings and parent-offspring groups across Scotland. It will be a six-year programme, beginning in Glasgow and Tayside in the first two years (Phase 1 before extending to other parts of Scotland in the remaining four years (Phase 2. In Phase 1, individuals aged between 35 and 55 years, living in the East and West of Scotland will be invited to participate, along with at least one (and preferably more siblings and any other first degree relatives aged 18 or over. The total initial sample size will be 15,000 and it is planned that this will increase to 50,000 in Phase 2. All participants will be asked to contribute blood samples from which DNA will be extracted and stored for future investigation. The information from the DNA, along with answers to a life-style and medical history questionnaire, clinical and biochemical measurements taken at the time of donation, and subsequent health developments over the life course (traced through electronic health records will be stored and used for research purposes. In addition, a detailed public consultation process will begin that will allow respondents' views to shape and develop the study. This is an important aspect to the research, and forms the continuation of a long-term parallel engagement process. Discussion As well as gene identification, the family-based study design will allow measurement of the heritability and familial aggregation of relevant quantitative traits, and the study of how genetic effects may vary by parent-of-origin. Long-term potential outcomes of this research include the targeting of
Schuler, Tammy A; Zaider, Talia I; Li, Yuelin; Hichenberg, Shira; Masterson, Melissa; Kissane, David W
Poor family functioning affects psychosocial adjustment and the occurrence of morbidity following bereavement in the context of a family's coping with advanced cancer. Family functioning typologies assist with targeted family-centered assessment and intervention to offset these complications in the palliative care setting. Our objective was to identify the number and nature of potential types in an American palliative care patient sample. Data from patients with advanced cancer (N = 1809) screened for eligibility for a larger randomized clinical trial were used. Cluster analyses determined whether patients could be classified into clinically meaningful and coherent groups, based on similarities in their perceptions of family functioning across the cohesiveness, expressiveness, and conflict resolution subscales of the Family Relations Index. Patients' reports of perceived family functioning yielded a model containing five meaningful family types. Cohesiveness, expressiveness, and conflict resolution appear to be useful dimensions by which to classify patient perceptions of family functioning. "At risk" American families may include those we have called hostile, low-communicating, and less-involved. Such families may benefit from adjuvant family-centered psychosocial services, such as family therapy. Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Eslami, Ahmad Ali; Rabiei, Leili; Abedi, Heidar Ali; Shirani, Majid; Masoudi, Reza
Coping skills enable caregivers to establish and maintain supportive relationships with the haemodialysis patients they care for. These skills are very important in terms of social support, promotion of mental health and social and family relations. The aim of this study is to investigate the coping skills of Iranian family caregivers as they take care of patients undergoing haemodialysis. Twenty participants were selected for the study through purposive sampling. The data gathering techniques used for the research were in-depth and unstructured interviews. The researchers used an inductive thematic analysis approach to analyse the data generated from the interviews. Four main themes emerged from the data: help-seeking skills, self-nurturing skills, time management skills and stress management skills. The focus of attention was on the stress management coping skills of the caregivers of haemodialysis patients together with their ability to cope with complex problems. Healthcare providers, by taking into account these skills and strategies of empowerment, can help other caregivers of haemodialysis patients cope with their heavy care conditions and better define their purposes in caretaking. © 2016 European Dialysis and Transplant Nurses Association/European Renal Care Association.
Padilla Fortunatti, Cristóbal Felipe
This work sought to identify the most important needs for family members of adult critical patients as described in the literature pursuant to the dimensions established in the "Critical Care Family Needs Inventory" (CCFNI) by Molter and Leske. A literature review was carried out by using the CCFNI instrument. The databases used were: Pubmed, CINAHL, Proquest Nursing & Allied Health Source, Proquest Psychology Journals, LILACS, Science Direct, Ovid SP, PsyicINFO, and SciELO. The following limitations for the search were identified: adult patients, articles in English and Spanish, with abstract and complete text available and which had been published from 2003 to June 2013; 15 articles were included. The family's hope on desired results and sincere communication with the healthcare staff turned out to be the most relevant needs, while the least important were related to comfort and having support structures or systems. Most of the studies were conducted in Asia and North America revealing differences in the order of importance assigned to each necessity. Certain sociodemographic and cultural characteristics impact upon how family members rank their needs; this also occurs with the nature of the most important needs for the family and the factors determining their prioritization. The articles included in this review mention the frequent interaction with the family and their holistic view of the person beyond the illness, determine that nurses are the most appropriate professionals to know and satisfy the family needs of critical patients.
Cristóbal Felipe Padilla Fortunatti
Full Text Available Objective. This work sought to identify the most important needs for family members of adult critical patients as described in the literature pursuant to the dimensions established in the "Critical Care Family Needs Inventory" (CCFNI by Molter and Leske. Methodology. A literature review was carried out by using the CCFNI instrument. The databases used were: Pubmed, CINAHL, Proquest Nursing & Allied Health Source, Proquest Psychology Journals, LILACS, Science Direct, Ovid SP, PsyicINFO, and SciELO. The following limitations for the search were identified: adult patients, articles in English and Spanish, with abstract and complete text available and which had been published from 2003 to June 2013; 15 articles were included. Results. The family's hope on desired results and sincere communication with the healthcare staff turned out to be the most relevant needs, while the least important were related to comfort and having support structures or systems. Most of the studies were conducted in Asia and North America revealing differences in the order of importance assigned to each necessity. Certain sociodemographic and cultural characteristics impact upon how family members rank their needs; this also occurs with the nature of the most important needs for the family and the factors determining their prioritization. Conclusion. The articles included in this review mention the frequent interaction with the family and their holistic view of the person beyond the illness, determine that nurses are the most appropriate professionals to know and satisfy the family needs of critical patients.
Martino, Francesca; Lia, Loredana; Bortolotti, Biancamaria; Menchetti, Marco; Monari, Marco; Ridolfi, Maria Elena; Sanza, Michele; Sasdelli, Anna; Berardi, Domenico
The scientific literature focused on factors involved in the onset of borderline personality disorder (BPD) has given a central role to the families of these patients. The role of the family in understanding the disorder has gradually changed thanks to research that investigated the interaction of several factors in the development of this psychopathology. Recently, scientific literature on DBP has allowed to consider parents as no longer "responsible" for the development of the disorder, but as directly involved in interpersonal problems of patients and therefore a potential "ally" in the management of crisis. The aim of this study is to describe and quantify the family burden of BPD patients and browse specific interventions for the family of these patients. PubMed and PsycINFO have been used for review with the following keywords: "borderline personality disorder", "family", "psychopathology", "burden", "psychoeducation", "caregiver", "caretaker". Studies on family burden of BPD patients are still few. Research shows that the family burden of BPD patients is comparable with that of families of patients with schizophrenia. Clinical trials of interventions for caregivers of patients with BPD show that specific strategies can reduce the family burden and improve their self-efficacy. Scientific literature highlights the relevance of problems of families with a BPD member and the importance of involving them in the treatment of these patients.
Vonnes, Cassandra; Wolf, Darcy
Falls are multifactorial in medical oncology units and are potentiated by an older adult's response to anxiolytics, opiates and chemotherapy protocols. In addition, the oncology patient is at an increased risk for injury from a fall due to coagulopathy, thrombocytopenia and advanced age. At our National Cancer Institute-designated inpatient cancer treatment centre located in the southeastern USA, 40% of the total discharges are over the age of 65. As part of a comprehensive fall prevention programme, bimonthly individual fall reports have been presented with the Chief Nursing Officer (CNO), nursing directors, nurse managers, physical therapists and front-line providers in attendance. As a result of these case discussions, in some cases, safety recommendations have not been followed by patients and families and identified as an implication in individual falls. Impulsive behaviour was acknowledged only after a fall occurred. A medical oncology unit was targeted for this initiative due to a prolonged length of stay. This patient population receives chemotherapeutic interventions, management of oncological treatment consequences and cancer progression care. The aim of this project was to explore if initiation of a Fall Prevention Agreement between the nursing team and older adults being admitted to medical oncology units would reduce the incidence of falls and the incidence of falls with injury. In order to promote patient and family participation in the fall reduction and safety plan, the Fall Risk and Prevention Agreement was introduced upon admission. Using the Morse Fall Scoring system, patient's risk for fall was communicated on the Fall Risk and Prevention Agreement. Besides admission, patients were reassessed based on change of status, transfer or after a fall occurs. Fall and fall injuries rates were compared two-quarters prior to implementation of the fall agreement and eight-quarters post implementation. Falls and fall injuries on the medical oncology unit
Alejandra Rodríguez Torres
Full Text Available OBJECTIVE The goal of this study is to compare and interpret the meaning of family support for diabetic patients and their families using social representations according to a structural approach of Abric’s theory. METHODS The study was carried out in a Family Medicine Center of the Chalco Municipality in Mexico State. The population studied comprised ten diabetic patient-family pairs. The first part of the study was a simple word association test that aimed to find terms or statements related to the concept of “family support”, as well as its frequency of appearance and range of association. Once the terms or statements were obtained, they were categorized according to their “support” capabilities. A semi-structured interview for each category was conducted as well as a graphic analysis of Friedman’s meanings. The discourse of diabetic patients was compared to that of the families in order to find similarities and differences. RESULTS Evocation of terms was done in the first part of the study, and it was found that the emotional domain was central to the discourse. However, in the second part of the study, when categorization and analysis of discourse is performed, there are differences in the centrality of terms and statements. The family tends to center in the active domain, whereas the patient centers in the emotional domain. CONCLUSIONS This study brings up the emotional needs of the patient as essential components of support efforts. This promotes reflection about changing strategies in the design of public healthcare programs in that they may include family support from the viewpoint of otherness.
Rodríguez, Alejandra; Camacho, Esteban Jaime; Escoto, María Del Consuelo; Contreras, Georgina; Casas, Donovan
The goal of this study is to compare and interpret the meaning of family support for diabetic patients and their families using social representations according to a structural approach of Abric's theory. The study was carried out in a Family Medicine Center of the Chalco Municipality in Mexico State. The population studied comprised ten diabetic patient-family pairs. The first part of the study was a simple word association test that aimed to find terms or statements related to the concept of "family support", as well as its frequency of appearance and range of association. Once the terms or statements were obtained, they were categorized according to their "support" capabilities. A semi-structured interview for each category was conducted as well as a graphic analysis of Friedman's meanings. The discourse of diabetic patients was compared to that of the families in order to find similarities and differences. Evocation of terms was done in the first part of the study, and it was found that the emotional domain was central to the discourse. However, in the second part of the study, when categorization and analysis of discourse is performed, there are differences in the centrality of terms and statements. The family tends to center in the active domain, whereas the patient centers in the emotional domain. This study brings up the emotional needs of the patient as essential components of support efforts. This promotes reflection about changing strategies in the design of public healthcare programs in that they may include family support from the viewpoint of otherness.
Fäldt Ciccolo, Erica B
Elements of family dynamics have been shown to be related to onset, course, as well as prognosis of anorexia nervosa and bulimia nervosa. The goal was to explore the experience of family relations in a group of patients with eating disorders using a projective family test. The Patient group (anorexia=21, bulimia=16), as well as a healthy Control group, were given a projective family test, the Eating Disorder Inventory-2, as well as Karolinska Scales of Personality. The Patient group expressed more discord within the family picture than the Control group, such as cold and loveless relationships and not feeling validated. The group of patients reporting the most family discord did not show more eating disorder pathology or general psychopathology. They did, however, have higher scores on the Eating Disorder Inventory-2 subscale Maturity Fears, as well as higher values on the Karolinska Scales of Personality subscale Socialization. These results are interpreted within the background of methodological challenges in this area of research.
Mensing, Liselore A.; Rinkel, Gabriel J E; Vlak, Monique H M; Van Der Schaaf, Irene C.; Ruigrok, Ynte M.
Object Patients with familial intracranial aneurysms (IA) have a higher risk of rupture than patients with sporadic IA. We compared geometric and morphological risk factors for aneurysmal rupture between patients with familial and sporadic aneurysmal subarachnoid hemorrhage (aSAH) to analyse if
Schene, A. H.; van Wijngaarden, B.
Members of Ypsilon, a Dutch family organization for relatives of patients with schizophrenia or chronic psychosis, were surveyed to determine whether patients whose families were involved in the organization were representative of all patients with schizophrenia in the Netherlands and whether
Yaman, Ayşe; Mesman, Judi; van Ijzendoorn, Marinus H; Bakermans-Kranenburg, Marian J
We investigated the influence of parenting practices in the prediction of child physical aggression in 94 second-generation Turkish immigrant families with 2-year-old toddlers, and the moderating role of child temperament. In a longitudinal study we tested both a dual-risk model and a differential susceptibility model. Observational data were obtained for mothers' positive parenting and authoritarian discipline, and maternal reports for child temperament and physical aggression. All measures were repeated 1 year later. Child temperament at age 2 years was a significant predictor of child aggression 1 year later. We found no main effects of positive parenting or of authoritarian discipline for the prediction of child aggression. However, we found support for the dual-risk hypothesis: Toddlers with difficult temperaments were more adversely affected by a lack of positive parenting than other children, but they did not benefit more from high levels of positive parenting than toddlers with more easy temperaments. We found no interaction effects with child temperament for authoritarian discipline. These findings provide support for the generalizability of the dual-risk model of parenting and temperament to non-Western immigrant families with young children. 2010 APA, all rights reserved
Murad-Regadas, Sthela Maria; Bezerra, Carla Camila Rocha; Peixoto, Ana Ligia Rocha; Regadas, Francisco Sérgio Pinheiro; Rodrigues, Lusmar Veras; Siebra, José Airton Gonçalves; da Silva Fernandes, Graziela Olivia; Vasconcelos, Rafael Aragão
ABSTRACTObjectives:To assess the prevalence of polyps in patients with a family history of colorectal cancer, in comparison to asymptomatic individuals with indication for screening.Methods:A prospective study in a group of patients who underwent colonoscopy between 2012 and 2014. Patients were divided into two groups: Group I: no family history of colorectal cancer, and Group II: with a family history in ﬁrst-degree relatives. Demographic characteristics, ﬁndings on colonoscopy...
Untas, Aurélie; Rascle, Nicole; Idier, Laetitia; Lasseur, Catherine; Combe, Christian
This study investigated the effect of family relations on patients' adjustment to dialysis. The two main aims were to develop a family typology, and to explore the influence of family profile on the patient's anxiety, depression and adherence to nutritional guidelines. The sample consisted of 120 patients (mean age 63 years; 67.5% of men). They completed several measures 1, 6 and 12 months after dialysis initiation. The scales used were the Family Relationship Index and the Hospital Anxiety and Depression Scale. Perceived adherence to nutritional guidelines was assessed using two visual analogical scales. Results showed that family relations remained stable over time. Cluster analysis yielded three family profiles, which were named conflict, communicative and supportive families. Patients belonging to conflict families perceived themselves as less adhering to nutritional guidelines. For these patients, anxiety and depressive moods increased significantly over time, whereas mental health remained stable over time for communicative and supportive families. This research underlines that family relations are essential in global consideration of the care of patients treated by dialysis. Conflict families seem especially at risk. They should be identified early to help them adapt to this stressful treatment.
Kocovska, M Zdraveska; Vaskova, O; Majstorov, V; Kuzmanovska, S; Gjorceva, D Pop; Jokic, V Spasic
The purpose of this study was to evaluate the effective dose to family members of thyroid cancer and hyperthyroid patients treated with radioiodine-131, and also to compare the results with dose constraints proposed by the International Commission of Radiological Protection (ICRP) and the Basic Safety Standards (BSS) of the International Atomic Energy Agency (IAEA). For the estimation of the effective doses, sixty family members of sixty patients, treated with radioiodine-131, and thermoluminiscent dosimeters (Model TLD 100) were used. Thyroid cancer patients were hospitalized for three days, while hyperthyroid patients were treated on out-patient basis. The family members wore TLD in front of the torso for seven days. The radiation doses to family members of thyroid cancer patients were well below the recommended dose constraint of 1 mSv. The mean value of effective dose was 0.21 mSv (min 0.02 - max 0.51 mSv). Effective doses, higher than 1 mSv, were detected for 11 family members of hyperthyroid patients. The mean value of effective dose of family members of hyperthyroid patients was 0.87 mSv (min 0.12 - max 6.79). The estimated effective doses to family members of hyperthyroid patients were higher than the effective doses to family members of thyroid carcinoma patients. These findings may be considered when establishing new national guidelines concerning radiation protection and release of patients after a treatment with radioiodine therapy.
Simbolo, Michele; Mafficini, Andrea; Agostini, Marco; Pedrazzani, Corrado; Bedin, Chiara; Urso, Emanuele D; Nitti, Donato; Turri, Giona; Scardoni, Maria; Fassan, Matteo; Scarpa, Aldo
Genetic screening in families with high risk to develop colorectal cancer (CRC) prevents incurable disease and permits personalized therapeutic and follow-up strategies. The advancement of next-generation sequencing (NGS) technologies has revolutionized the throughput of DNA sequencing. A series of 16 probands for either familial adenomatous polyposis (FAP; 8 cases) or hereditary nonpolyposis colorectal cancer (HNPCC; 8 cases) were investigated for intragenic mutations in five CRC familial syndromes-associated genes (APC, MUTYH, MLH1, MSH2, MSH6) applying both a custom multigene Ion AmpliSeq NGS panel and conventional Sanger sequencing. Fourteen pathogenic variants were detected in 13/16 FAP/HNPCC probands (81.3 %); one FAP proband presented two co-existing pathogenic variants, one in APC and one in MUTYH. Thirteen of these 14 pathogenic variants were detected by both NGS and Sanger, while one MSH2 mutation (L280FfsX3) was identified only by Sanger sequencing. This is due to a limitation of the NGS approach in resolving sequences close or within homopolymeric stretches of DNA. To evaluate the performance of our NGS custom panel we assessed its capability to resolve the DNA sequences corresponding to 2225 pathogenic variants reported in the COSMIC database for APC, MUTYH, MLH1, MSH2, MSH6. Our NGS custom panel resolves the sequences where 2108 (94.7 %) of these variants occur. The remaining 117 mutations reside inside or in close proximity to homopolymer stretches; of these 27 (1.2 %) are imprecisely identified by the software but can be resolved by visual inspection of the region, while the remaining 90 variants (4.0 %) are blind spots. In summary, our custom panel would miss 4 % (90/2225) of pathogenic variants that would need a small set of Sanger sequencing reactions to be solved. The multiplex NGS approach has the advantage of analyzing multiple genes in multiple samples simultaneously, requiring only a reduced number of Sanger sequences to resolve
Balliu, Brunilda; Uh, Hae-Won; Tsonaka, Roula; Boehringer, Stefan; Helmer, Quinta; Houwing-Duistermaat, Jeanine J
In this analysis, we investigate the contributions that linkage-based methods, such as identical-by-descent mapping, can make to association mapping to identify rare variants in next-generation sequencing data. First, we identify regions in which cases share more segments identical-by-descent around a putative causal variant than do controls. Second, we use a two-stage mixed-effect model approach to summarize the single-nucleotide polymorphism data within each region and include them as covariates in the model for the phenotype. We assess the impact of linkage disequilibrium in determining identical-by-descent states between individuals by using markers with and without linkage disequilibrium for the first part and the impact of imputation in testing for association by using imputed genome-wide association studies or raw sequence markers for the second part. We apply the method to next-generation sequencing longitudinal family data from Genetic Association Workshop 18 and identify a significant region at chromosome 3: 40249244-41025167 (p-value = 2.3 × 10(-3)).
Multigene panel next generation sequencing in a patient with cherry red macular spot: Identification of two novel mutations in NEU1 gene causing sialidosis type I associated with mild to unspecific biochemical and enzymatic findings
Discussion: Sialidosis should be suspected in patients with cherry red macular spots, even with non-significant urinary sialic acid excretion. Multigene panel next generation sequencing can establish a definite diagnosis, allowing for counseling of the patient and family.
The current study investigated the perceived importance and the perceived met needs of family members in the medical intensive care unit and assessed family members' satisfaction with needs met. Studies conducted throughout the world over the past 30 years indicate that family needs are still neglected. Unmet needs of family members of patients in the intensive care unit lead to dissatisfaction with care. A cross-sectional study. A total of 70 family members of critically ill patients were included in this study conducted in a medical intensive care unit in Israel between October 2007-September 2008, using a structured interview. Three outcomes measured by the Family Satisfaction in the Intensive Care Unit Inventory were regressed separately for baseline variables and family needs met subscales as measured by the Critical Care Family Needs Inventory. Multivariate linear regression analysis was used to detect factors that could have predicted each outcome. The results showed differences between the perceived importance and the perceived met needs of family members. Satisfaction with care was positively related to meeting all needs domains except the information need. However, satisfaction with information and decision-making was related only to meeting information and emotional support needs. Continued unmet needs of family members of intensive care unit patients have a negative impact on family satisfaction. Only sweeping changes in clinical practice will succeed in meeting the unmet needs of patients' families. © 2012 Blackwell Publishing Ltd.
Discusses symptoms of Alzheimer Disease and suggests client-centered counseling techniques to use with patients and family. Considers the disease's effect on family relationships relative to stage of family development. Examines the adjustment of the caregiving spouse. Offers practical suggestions for coping. (RC)
Taloney, Linda; Flores, Gabriela
The mission of our hospital states: "Patients and their families are treated with compassion in a family-centered care environment that recognizes their physical, emotional, financial, and spiritual needs." Family-centered care is an approach to health care that shapes policies, programs, facility design, and day-to-day interactions among patients and their families, physicians, nurses, and other health care professionals. Health care professionals across all disciplines and in all care environments have the opportunity to advance the practice of patient- and family-centered care. They do so by welcoming patients and their families as partners in care-acknowledging patient and family expertise and strengths, encouraging their input, and acknowledging the value of their observations and perceptions. There is a growing recognition of the importance of patient and family care experiences as a key part of quality care. Through this partnership, patients and their families are viewed as valuable sources of information that can impact the quality of the care they receive. Their perspective on the care they receive can be used to shape effective solutions and target practice improvements in the care delivery experience. As an organization, we have been focused on implementing patient- and family-centered care for many years. We are unique in that we have parents of patients on the hospital staff and regularly seek their input, along with that of our Family Advisory Boards (English and Spanish speaking) and Teen Advisory Board. You have to ask yourself the question, "Are you ready to incorporate patient- and family-centered care into your practice?"
Kahan, Ernesto; Fogelman, Yacov; Kitai, Eliezer; Vinker, Shlomo
The threat of bioterrorism consequent to the September 11, 2001 attack in the USA generated suggestions for improved medical response mainly through hospital preparedness. The aim of the present study was to investigate the impact of this period of tension on patients' first choice for care and for receiving relevant information, and on primary care doctors' feelings of responsibility in the eventuality of an anthrax attack. During October 11-31, 2001, 500 patients from 30 clinics throughout Israel were asked to complete a questionnaire on their awareness of the anthrax threat, measures taken to prepare for it, and preferred sources of care and information. Their 30 physicians, and an additional 20, completed a questionnaire on knowledge about anthrax and anthrax-related patient behaviours and clinic visits. The outstanding finding was the low rate (30%) of patients who chose the hospital emergency department as their first choice for care or information if they were worried about an anthrax attack or the media communicated that an attack was in progress. The other two-thirds preferred their family doctor or the health authorities. Most of the physicians (89%) felt it was their responsibility to treat anthrax-infected patients and that they should therefore be supplied with appropriate guidelines. This study suggests that in Israel, a country with a high degree of awareness of civil defence aspects, both patients and primary care doctors believe that family physicians should have a major role in the case of bioterrorist attacks. This must be seriously considered during formulation of relevant health services programmes.
Dignity is a complex construct lacking clear meaning. While conceptualizing dignity as a basic right is useful in determining and justifying social and economic costs of health care, it is insufficient in considerations of personal dignity at the end of life. There is a dissonance between how dignity is shown to matter to healthcare professionals compared to patients. Furthermore, dignity is not clearly linked in the empirical literature to variables of quality of life and to a dignified death. Current studies about the construct of dignity enhance understanding of how we extrinsically construct moral worth, but not of how individuals interpret intrinsic moral worth through maintaining their personal integrity and attitudes of being cared for. References to key qualitative studies illuminate how clinicians ethically negotiate a creation of dying with dignity. As one's personal integrity fades, caregivers (i.e. healthcare providers, family and friends) are challenged to recognise and attend to the individual's vulnerability. I suggest that caregivers nurture personal integrity - through gestures that remember and honour aspects of the other as he/she was once known. Perhaps only through others can dying people be granted death with a sense of personal dignity.
He Junxiang; Jiang Xuzhou; Zhang Shunzhi; Huang Guomei; Mu Huinian; Li Yi; Li Meihe
Purpose: To investigate the main points of diagnosing hereditary osteogenesis imperfect. Methods: Retrospective analysis of clinical and radiological diagnosis of hereditary osteogenesis imperfect was done in 35 surviving patients and 7 deaths in a family. Results: (1) A family was described in which hereditary osteogenesis imperfect occurred in 5 generations. Forty-two patients (18 males, 24 females) ranged in age from 10 months to 67 years. (2) Both modes of inheritance existed simultaneously (dominant in 35 patients, recessive in 7 patients). (3) Blue sclera of different shades was found in all 42 patients. (4) Radiological change of bone was recognised in 35 surviving patients. The conditions were as follows: in 29 patients, general decreased bone density, thin bone cortex and long slender tubular bones were observed; six patients were normal; twenty-two patients had fracture. (5) Twenty-four patients (including 3 deaths) suffered form progressive deafness. (6) Twenty-one patients (including 3 deaths) had the triad of blue sclera, osteopsathyrosis and progressive deafness. (7) An increase in alkaline phosphatase level (in 17 patients) was confirmed by the tests in our laboratory. Conclusion: The authors suggested that the triad of blue sclera, osteopsathyrosis and progressive deafness is the characteristic manifestations of the disease, especially blue sclera, which may be regarded as an initial and suggestible physical sign, and an essential criterion for diagnosis
Full Text Available Addiction has multi-factorial etiopathogenesis. Morbidity risk factors include both individual and social factors. Social factors are considered to be very important, especially at the initial stage of taking the substance. Family and the social environment, with their behavior and social norms, are the primary psychosocial determinants. Family functioning has an impact on both the development and the maintenance of addictions, so it is an important research topic. The aim of this study was to determine if families of drug addicts who are on methadone maintenance treatment differ in the level of functionality from families without addiction problems. The study sample included 100 persons divided into two groups - clinical and control. The clinical group consisted of 50 persons - drug addicts who are on methadone maintenance treatment, whereas the control group consisted of 50 persons without addiction problems. FACES IV and General questionnaire were used as instruments for the control group, and POMPIDU questionnaire for the clinical group. The results show that the families of addicts who are in methadone substitution treatment program vary in the level of functionality compared to families in which there is no problem of addiction and in a way that the families of the control group are more functional. These results in our region confirmed earlier results on the connection between family dysfunction and substance abuse, which may have significant implications in the treatment and prevention programs of addictions.
Lugovtsova, Y A; Karnaukh, V N
To analyze the medical and social condition of 70 families having a member with multiple sclerosis of working age. We used the classification of types and kinds of families of chronically ill patients of working-age that included two sections - grouping families by health and social status. By medical condition, most families are assessed as dysfunctional II degree, by welfare as at risk families. Both health and social status of the family depends on a number of social factors as well as the clinical characteristics of the disease, in particular, type of disease course and severity of neurological deficit.
Mosleh, S; Alja'afreh, M; Lee, A J
The aim of the study was to assess the validity of family members/friends as proxies by comparing perceptions of satisfaction with care and decision making between critically ill patients and their family/friends. A comparative, descriptive cross-sectional study. Seven Critical Care Units across four public and military hospitals in the centre and southern regions of Jordan. A modified version of the Family Satisfaction-ICU (FS-ICU) questionnaire was distributed to Critical Care Unit (CCU) patients before hospital discharge. In addition, up to two family members/close friends were also asked to complete the questionnaire. A total of 213 patients (response rate 72%) and 246 family members/friends (response rate 79%) completed and returned the questionnaire. Although the majority of family members/friends and patients were satisfied with overall care, patients were generally significantly less satisfied (mean (SD) care subscale 75.6 (17.8) and 70.9 (17.3), respectively, (p=0.005). When individual items were examined, significant differences in nursing care (family/friends 80.1 (20.7) versus patient 75.9 (22.2), p=0.038) and inclusion in decision making (family/friends 53.9 (33.2) versus patient 62.0 (34.2), p=0.010) were found. The study showed a degree of congruence between patients and their family members/friends in relation to their satisfaction with the CCU experience. Thus, views of family/friends may serve as a proxy in assessing care and decision making processes of critically ill patients. Appropriate training of the critical care team and provision of strategies to address the concerns of patients' families are needed to improve overall patient satisfaction. Copyright © 2015 Elsevier Ltd. All rights reserved.
Full Text Available Retinal dystrophies (RD constitute a group of blinding diseases that are characterized by clinical variability and pronounced genetic heterogeneity. The different nonsyndromic and syndromic forms of RD can be attributed to mutations in more than 200 genes. Consequently, next generation sequencing (NGS technologies are among the most promising approaches to identify mutations in RD. We screened a large cohort of patients comprising 89 independent cases and families with various subforms of RD applying different NGS platforms. While mutation screening in 50 cases was performed using a RD gene capture panel, 47 cases were analyzed using whole exome sequencing. One family was analyzed using whole genome sequencing. A detection rate of 61% was achieved including mutations in 34 known and two novel RD genes. A total of 69 distinct mutations were identified, including 39 novel mutations. Notably, genetic findings in several families were not consistent with the initial clinical diagnosis. Clinical reassessment resulted in refinement of the clinical diagnosis in some of these families and confirmed the broad clinical spectrum associated with mutations in RD genes.
Full Text Available Autosomal dominant neurohypophyseal diabetes insipidus is a rare form of central diabetes insipidus that is caused by mutations in the vasopressin-neurophysin II (AVP-NPII gene. It is characterized by persistent polydipsia and polyuria induced by deficient or absent secretion of arginine vasopressin (AVP. Here we report a case of familial neurohypophyseal diabetes insipidus in four generations of a Korean family, caused by heterozygous missense mutation in exon 2 of the AVP-NPII gene (c.286G>T. This is the first report of such a case in Korea.
Eandi, Chiara M; Dallorto, Laura; Spinetta, Roberta; Micieli, Maria Pia; Vanzetti, Mario; Mariottini, Alessandro; Passerini, Ilaria; Torricelli, Francesca; Alovisi, Camilla; Marchese, Cristiana
We report results of DNA analysis with next generation sequencing (NGS) of 21 consecutive Italian patients from 17 unrelated families with clinical diagnosis of Usher syndrome (4 USH1 and 17 USH2) searching for mutations in 11 genes: MYO7A, CDH23, PCDH15, USH1C, USH1G, USH2A, ADGVR1, DFNB31, CLRN1, PDZD7, HARS. Likely causative mutations were found in all patients: 25 pathogenic variants, 18 previously reported and 7 novel, were identified in three genes (USH2A, MYO7A, ADGRV1). All USH1 presented biallelic MYO7A mutations, one USH2 exhibited ADGRV1 mutations, whereas 16 USH2 displayed USH2A mutations. USH1 patients experienced hearing problems very early in life, followed by visual impairment at 1, 4 and 6 years. Visual symptoms were noticed at age 20 in a patient with homozygous novel MYO7A missense mutation c.849G > A. USH2 patients' auditory symptoms, instead, arose between 11 months and 14 years, while visual impairment occurred later on. A homozygous c.5933_5940del;5950_5960dup in USH2A was detected in one patient with early deafness. One patient with homozygous deletion from exon 23 to 32 in USH2A suffered early visual symptoms. Therefore, the type of mutation in USH2A and MYO7A genes seems to affect the age at which both auditory and visual impairment occur in patients with USH.
Wood, William A; Bennett, Antonia V; Basch, Ethan
Recent advancements in consumer directed personal computing technology have led to the generation of biomedically-relevant data streams with potential health applications. This has catalyzed international interest in Patient Generated Health Data (PGHD), defined as "health-related data - including health history, symptoms, biometric data, treatment history, lifestyle choices, and other information-created, recorded, gathered, or inferred by or from patients or their designees (i.e. care partners or those who assist them) to help address a health concern."(Shapiro et al., 2012) PGHD offers several opportunities to improve the efficiency and output of clinical trials, particularly within oncology. These range from using PGHD to understand mechanisms of action of therapeutic strategies, to understanding and predicting treatment-related toxicity, to designing interventions to improve adherence and clinical outcomes. To facilitate the optimal use of PGHD, methodological research around considerations related to feasibility, validation, measure selection, and modeling of PGHD streams is needed. With successful integration, PGHD can catalyze the application of "big data" to cancer clinical research, creating both "n of 1" and population-level observations, and generating new insights into the nature of health and disease. Copyright © 2014 Federation of European Biochemical Societies. Published by Elsevier B.V. All rights reserved.
Son, Ju-Young; Choi, Yun-Jung
This study was aimed to test the structured anger management nursing program for the family members of patients with alcohol use disorders (AUDs). Families with the AUDs suffer from the dysfunctional family dynamic caused by the patients' deteriorative disease processes of alcohol dependence. Family members of AUDs feel bitter and angry about the uncontrolled behaviors and relapses of the patients in spite of great effort for a long time. This chronic anger threatens the optimal function of the family as well as obstructs the family to help the patients who are suffering from AUDs. Sixty three subjects were participated who were referred from community mental health centers, alcohol consultation centers, and an alcohol hospital in Korea. Pre-post scores of the Korean Anger Expression Inventory were used to test the program. An anger management program was developed and implemented to promote anger expression and anger management for the family members of the patients with AUDs. The total anger expression score of the experimental group was significantly more reduced as compared with that of the control group. Subjects in the experimental group reported after the program that they felt more comfortable and their life was changed in a better way. The anger management program was effective to promote anger expression and anger management for family members of AUDs. Nurses need to include family members in their nursing process as well as to care of patients with AUDs to maximize nursing outcome and patient satisfaction. 2010 Elsevier Inc. All rights reserved.
Horigian, Viviana E; Anderson, Austen R; Szapocznik, José
In this article, we review the research evidence generated over 40 years on Brief Strategic Family Therapy illustrating the NIH stages of intervention development and highlighting the translational process. Basic research (Stage 0) led to the discovery of the characteristics of the population and the nature of the problems that needed to be addressed. This step informed the selection of an intervention model that addressed the problems presented by the population, but in a fashion that was congruent with the population's culture, defined in terms of its value orientations. From this basic research, an intervention that integrated structural and strategic elements was selected and refined through testing (Stage I). The second stage of translation (Stage II) included efficacy trials of a specialized engagement module that responded to challenges to the provision of services. It also included several other efficacy trials that documented the effects of the intervention, mostly in research settings or with research therapists. Stages III/IV in the translational process led to the testing of the effectiveness of the intervention in real-world settings with community therapists and some oversight from the developer. This work revealed that an implementation/organizational intervention was required to achieve fidelity and sustainability of the intervention in real-world settings. The work is currently in Stage V in which new model development led to an implementation intervention that can ensure fidelity and sustainability. Future research will evaluate the effectiveness of the current implementation model in increasing adoption, fidelity, and long-term sustainability in real-world settings. © 2016 Family Process Institute.
Gold-von Simson, Gabrielle; Rutkowski, Monika; Berlin, Dena; Axelrod, Felicia B
Familial dysautonomia (FD) is a genetic disease associated with a high incidence of sudden death. If fatal bradyarrhythmia is an etiological factor then the incidence of sudden death should decrease after pacemaker placement. Retrospective review of 596 registered FD patients revealed that 22 FD patients (3.7%) had pacemakers placed between December 1984 and June 2003. Clinical and electrocardiographic indications for placement and demographic data were assessed for 20 of the 22 patients (10 males, 10 females, ages 4 to 48 years). Two patients were excluded because of insufficient data. Prior to pacemaker placement, presenting symptoms were syncope and cardiac arrest, 16/20 (80%) and 6/20 (30 %), respectively. Asystole was the most frequent electrocardiographic finding and was documented in 17/20 patients (85 %). Other electrocardiographic abnormalities included bradycardia, AV block, prolonged QTc and prolonged JTc. The average duration of pacemaker utilization was 5.7 years (range 5 months to 14.5 years). Complications included infection (1 patient) and wire migration (2 patients). In the one patient with infection, the pacemaker was permanently removed. This patient then experienced multiple syncopal episodes and death. There were 7 other deaths. Three deaths occurred suddenly without preceding events, and 4 patients had non-cardiac causes of death. None of these 7 deceased patients had recurrence of syncope after pacemaker placement. In the 12 surviving patients, 6 had recurrence of syncope but none had cardiac arrest. Pacemaker placement may protect FD patients from fatal bradyarrhythmia and may decrease the incidence of syncope. However, data are limited and prospective analysis is needed.
Nieuwenhuis, M. H.; Mathus-Vliegen, E. M.; Baeten, C. G.; Nagengast, F. M.; van der Bijl, J.; van Dalsen, A. D.; Kleibeuker, J. H.; Dekker, E.; Langers, A. M.; Vecht, J.; Peters, F. T.; van Dam, R.; van Gemert, W. G.; Stuifbergen, W. N.; Schouten, W. R.; Gelderblom, H.; Vasen, H. F. A.
BACKGROUND: The optimal treatment of desmoid tumours is controversial. We evaluated desmoid management in Dutch familial adenomatous polyposis (FAP) patients. METHODS: Seventy-eight FAP patients with desmoids were identified from the Dutch Polyposis Registry. Data on desmoid morphology, management,
Leslie, Myles; Paradis, Elise; Gropper, Michael A; Milic, Michelle M; Kitto, Simon; Reeves, Scott; Pronovost, Peter
This paper presents an exploratory case study of clinician-patient communications in a specific clinical environment. It describes how intensive care unit (ICU) clinicians' technical and social categorizations of patients and families shape the flow of communication in these acute care settings. Drawing on evidence from a year-long ethnographic study of four ICUs, we develop a typology of patients and families as viewed by the clinicians who care for them. Each type, or category, of patient is associated with differing communication strategies, with compliant patients and families engaged in greater depth. In an era that prioritizes patient engagement through communication for all patients, our findings suggest that ICU teams need to develop new strategies for engaging and communicating with not just compliant patients and families, but those who are difficult as well. We discuss innovative methods for developing such strategies.
Park, Young-Yoon; Jeong, Young-Jin; Lee, Junyong; Moon, Nayun; Bang, Inho; Kim, Hyunju; Yun, Kyung-Sook; Kim, Yong-I; Jeon, Tae-Hee
This study investigated the effect of family members on terminally ill cancer patients by measuring the relationship of the presence of the family caregivers, visiting time by family and friends, and family adaptability and cohesion with patient's anxiety and depression. From June, 2016 to March, 2017, 100 terminally ill cancer patients who were admitted to a palliative care unit in Seoul, South Korea, were surveyed, and their medical records were reviewed. The Korean version of the Family Adaptability and Cohesion Evaluation Scales III and Hospital Anxiety-Depression Scale was used. Chi-square and multiple logistic regression analyses were used. The results of the chi-square analysis showed that the presence of family caregivers and family visit times did not have statistically significant effects on anxiety and depression in terminally ill cancer patients. In multiple logistic regression, when adjusted for age, sex, ECOG PS, and the monthly average income, the odds ratios (ORs) of the low family adaptability to anxiety and depression were 2.4 (1.03-5.83) and 5.4 (1.10-26.87), respectively. The OR of low family cohesion for depression was 5.4 (1.10-27.20) when adjusted for age, sex, ECOG PS, and monthly average household income. A higher family adaptability resulted in a lower degree of anxiety and depression in terminally ill cancer patients. The higher the family cohesion, the lower the degree of depression in the patient. The presence of the family caregiver and the visiting time by family and friends did not affect the patient's anxiety and depression.
Anggia Fajar Hardianti
Full Text Available Introduction: Erythropoietic agent as standard practice for anemia treatment, which has a function to increase the value of hemoglobin (Hb to 12 g/dl in patients with chronic renal failure (CRF, who receiving dialysis treatment. The use of erythropoietin has to keep of the iron/Fe amount in the body. Family who have a duty of care should have knowledge, attitude, and behavior to maintain patient’s Hb by giving support to the patient to obey the Fe diet. The aimed of this study was to investigate the effect of family centered care approach in management Fe diet toward family’s behaviour in maintenance Hb level of CRF patients in hemodialysis ward, Gambiran Hospital, Kediri. Method: This study was used a pre experimental design. Total sample were 10 respondents, who met to inclusion criteria. The independent variables were knowledge, attitude, and psychomotor of family in maintenance of Hb level in CRF’s patients. The dependent variable was Fe diet management with family centered care approach. Data was collected by using a structured questionnaire and home visit observation. Result: Data was analyzed by using Wilcoxon Sign Rank Test with significance level α≤0.05. Results showed that Fe diet management with family centered care approach took effect to family’s knowledge (p=0.011, family’s attitude (p=0.005 and family’s psychomotor (p=0.005 in maintenance Hb level of CRF patients. Discussion: Family’s knowledge, attitude, and psychomotor were effected by experiences during the care of a patient, not affordable to access information and patient’s own decision. The strengths and weaknesses in the family to got a better plan of care can be made by discuss and sharing among researcher, patient and his family. It can be concluded that Fe diet management with family centered care approach took effect to family’s behaviour. Further studies should involve larger respondents and better measurement tools to obtain more accurate results.
Schür, Remmelt; Sjouwerman, Rachel; Service, Susan K.; Araya, Carmen; Araya, Xinia; Bejarano, Julio; Knowles, Emma; Gomez-Makhinson, Juliana; Lopez, Maria C.; Aldana, Ileana; Teshiba, Terri M.; Abaryan, Zvart; Al-Sharif, Noor B.; Navarro, Linda; Tishler, Todd A.; Altshuler, Lori; Bartzokis, George; Escobar, Javier I.; Glahn, David C.; Thompson, Paul M.; Lopez-Jaramillo, Carlos; Macaya, Gabriel; Molina, Julio; Reus, Victor I.; Sabatti, Chiara; Cantor, Rita M.; Freimer, Nelson B.; Bearden, Carrie E.
Recent theories regarding the pathophysiology of bipolar disorder suggest contributions of both neurodevelopmental and neurodegenerative processes. While structural neuroimaging studies indicate disease-associated neuroanatomical alterations, the behavioural correlates of these alterations have not been well characterized. Here, we investigated multi-generational families genetically enriched for bipolar disorder to: (i) characterize neurobehavioural correlates of neuroanatomical measures implicated in the pathophysiology of bipolar disorder; (ii) identify brain–behaviour associations that differ between diagnostic groups; (iii) identify neurocognitive traits that show evidence of accelerated ageing specifically in subjects with bipolar disorder; and (iv) identify brain–behaviour correlations that differ across the age span. Structural neuroimages and multi-dimensional assessments of temperament and neurocognition were acquired from 527 (153 bipolar disorder and 374 non-bipolar disorder) adults aged 18–87 years in 26 families with heavy genetic loading for bipolar disorder. We used linear regression models to identify significant brain–behaviour associations and test whether brain–behaviour relationships differed: (i) between diagnostic groups; and (ii) as a function of age. We found that total cortical and ventricular volume had the greatest number of significant behavioural associations, and included correlations with measures from multiple cognitive domains, particularly declarative and working memory and executive function. Cortical thickness measures, in contrast, showed more specific associations with declarative memory, letter fluency and processing speed tasks. While the majority of brain–behaviour relationships were similar across diagnostic groups, increased cortical thickness in ventrolateral prefrontal and parietal cortical regions was associated with better declarative memory only in bipolar disorder subjects, and not in non
Xing, Yan-Fang; Lin, Jin-Xiang; Li, Xing; Lin, Qu; Ma, Xiao-Kun; Chen, Jie; Wu, Dong-Hao; Wei, Li; Yin, Liang-Hong; Wu, Xiang-Yuan
Advance directives are a sensitive issue among traditional Chinese people, who usually refrain from mentioning this topic until it is imperative. Medical decisions for cancer patients are made by their families, and these decisions might violate patients' personal will. This study aimed to examine the acceptance of advance directives among Chinese cancer patients and their families and patient participation in this procedure and, finally, to analyze the moral risk involved. While 246 patients and their family members refused official discussion of an advance directive, the remaining 166 patients and their families accepted the concept of an advance directive and signed a document agreeing to give up invasive treatment when the anti-cancer treatment was terminated. Of these, only 24 patients participated in the decision making. For 101 patients, anti-cancer therapy was ended prematurely with as many as 37 patients not told about their potential loss of health interests. Participants were 412 adult cancer patients from 9 leading hospitals across China. An advance directive was introduced to the main decision makers for each patient; if they wished to sign it, the advance directive would be systematically discussed. A questionnaire was given to the oncologists in charge of each patient to evaluate the interaction between families and patients, patients' awareness of their disease, and participation in an advance directive. Advance directives were not widely accepted among Chinese cancer patients unless anti-cancer therapy was terminated. Most cancer patients were excluded from the discussion of an advance directive.
Sateesh R Koujalgi
Full Text Available Background: Psychological disorders can have a direct impact on family functioning. Family dysfunction is an indirect factor leading to the relapse of psychological disorders. Literature on family dysfunction in anxiety disorder is limited. Role of family and its functioning in obsessive-compulsive disorder (OCD may help in better understanding of the role of social factors in OCD. Aim: The aim was to compare family functions in patients with OCD and compare with controls. Materials and Methods: The sample included 30 cases and 30 age and sex-matched controls. The patients were diagnosed as having OCD using ICD-10 DCR criteria. Yale-Brown Obsessive Compulsive Scale was used to assess the severity of OCD among patients. General Health Questionnaire was used as screening instruments for psychiatric disorder among the control population. Family function was assessed in cases and control using the Family Interaction Patterns Schedule (FIPS. Statistical analysis was performed using SPSS software. Results: Obsessive compulsive disorder patients in comparison controls had significantly increased total FIPS score (P = 0.001. Conclusion: Families with OCD are more significantly impaired in multiple domains of family dynamics than families without member suffering from OCD. It is, therefore, essential that family-based structure effective assessment be sought in the psychosocial management of OCD.
Lambeth J David
Full Text Available Abstract Background NADPH-oxidases (Nox and the related Dual oxidases (Duox play varied biological and pathological roles via regulated generation of reactive oxygen species (ROS. Members of the Nox/Duox family have been identified in a wide variety of organisms, including mammals, nematodes, fruit fly, green plants, fungi, and slime molds; however, little is known about the molecular evolutionary history of these enzymes. Results We assembled and analyzed the deduced amino acid sequences of 101 Nox/Duox orthologs from 25 species, including vertebrates, urochordates, echinoderms, insects, nematodes, fungi, slime mold amoeba, alga and plants. In contrast to ROS defense enzymes, such as superoxide dismutase and catalase that are present in prokaryotes, ROS-generating Nox/Duox orthologs only appeared later in evolution. Molecular taxonomy revealed seven distinct subfamilies of Noxes and Duoxes. The calcium-regulated orthologs representing 4 subfamilies diverged early and are the most widely distributed in biology. Subunit-regulated Noxes represent a second major subdivision, and appeared first in fungi and amoeba. Nox5 was lost in rodents, and Nox3, which functions in the inner ear in gravity perception, emerged the most recently, corresponding to full-time adaptation of vertebrates to land. The sea urchin Strongylocentrotus purpuratus possesses the earliest Nox2 co-ortholog of vertebrate Nox1, 2, and 3, while Nox4 first appeared somewhat later in urochordates. Comparison of evolutionary substitution rates demonstrates that Nox2, the regulatory subunits p47phox and p67phox, and Duox are more stringently conserved in vertebrates than other Noxes and Nox regulatory subunits. Amino acid sequence comparisons identified key catalytic or regulatory regions, as 68 residues were highly conserved among all Nox/Duox orthologs, and 14 of these were identical with those mutated in Nox2 in variants of X-linked chronic granulomatous disease. In addition to
The prevalence of hypertension is increasing worldwide but awareness, treatment and control rates are very poor. Hence, this study ... Data was analyzed using Stata statistical software (Version 10). Results: The mean age ... in clinical practice. Keywords: Hypertension, Family Support, Awareness, Control, Family Physician ...
a positive family history of psychiatric illness, and these two subjects had mild to moderate ... factors that contribute to the genesis of depressive disorders are ... More than 90% of persons with depression are treated in family .... symptoms that were inquired about included feelings of crawling .... psychological symptoms.
Chong, Jia An; Quah, Yan Ling; Yang, Grace Meijuan; Menon, Sumytra; Radha Krishna, Lalit Kumar
The practice of patient autonomy within the prevailing bioethical framework in the West appears increasingly at odds with the prominent influence of the family in medical decision making in the Asian culture. The actual extent of involvement of patient versus the family in the decision making process for cancer management in clinical practice is largely unknown in Asia. (1) To describe patient and family involvement in healthcare decision making in actual practice, and to determine whether those practices are consistent with Singapore law; and (2) to act as a pilot for a larger prospective study examining the preferences of cancer patients on the decision making process, and the reasons for excluding patients from that process. A retrospective review of patients who died in an oncology ward in Singapore General Hospital from February to April 2011. Patient and family involvement in discussions on (1) disclosure of diagnosis, (2) initial treatment decisions and (3) initiation of a 'maximum ward management' order was evaluated by reviewing case notes completed by healthcare professionals. Data were collected for 55 patients. Involvement of patients and families at first disclosure of diagnosis was noted in 61% and 64% of cases, respectively. In 12% of cases, the family requested withholding of the diagnosis from the patient. 86% of patients were involved in the initial treatment decisions, and their family was involved in 65% of cases. Only 9% of the 32 alert patients were consulted in end of life decisions. Factors associated with lower patient involvement were advanced age and inability to speak English. While most cancer patients are involved in the healthcare decision making process during the early phase, familial involvement gains prominence as the disease progresses. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/
Gabriela Vázquez Armenta
Full Text Available Introduction: The family and psychological approaches in asthma patients are essential because a dysfunctional family can increase asthma symptoms of the sick child. Aim: To determine family functioning and classification of asthma in pediatric patients, and the condition in the areas that comprises it. Method: A cross-sectional study in asthmatic patients treated in pediatrics Regional General Hospital No. 1 between April and July 2015 was done. Asthma severity was classified in response to the GINA 2010 guide. The Dr. Emma Espejel Scale of Family Functioning was applied to the patient's family. Results: The male presented more severe asthma by 70%, especially in school age. The dysfunction of the control area of family dynamics in the Mexican family impact on the severity of asthma. Discussion and Conclusion: 50% of families with a carrier member of asthma reflect dysfunction; control area was the most affected. Family and psychological approaches in patients with asthma are basic to prevent changes in family function.
Kodali, Sashikanth; Stametz, Rebecca; Clarke, Deserae; Bengier, Amanda; Sun, Haiyan; Layon, A J; Darer, Jonathan
Family-centered care provides family members with basic needs, which includes information, reassurance, and support. Though national guidelines exist, clinical adoption often lags behind in this area. The Geisinger Health System developed and implemented a program for reliable delivery of best practices related to family communication to patients and families admitted to the intensive care unit (ICU). Using a quasiexperimental study design and the 24-item Family Satisfaction in the Intensive Care Unit questionnaire (FSICU-24©) to determine family satisfaction, we measured the impact of a "family communication pathway" facilitated by tools built into the electronic health record on the family satisfaction of neurosurgical patients admitted to the ICU. There was no statistically significant difference noted in family satisfaction as determined by FSICU-24 scores, including the Care and Decision Making constructs between the pre- and post-intervention pilot population. The percentage of families reporting the occurrence of a family conference showed only minimal improvement, from 46.5% before to 52.5% following the intervention (p = 0.565). This was mirrored by low numbers of documented family conferences by providers, suggesting poor uptake despite buy-in, use of electronic checklists, and repeated attempts at education. This paper reviews the challenges to and implications for implementing national guidelines in the area of family communication in an ICU coupled with the principles of clinical reengineering.
In the cause of an historical study dealing with the closing of an ancient psychiatric hospital in Luebeck during the 2nd world war the infrafamilial structures of the deported patients were explored. Among 136 clinical reports 42 cases were found in which families succeeded to get into contact with deported patients, in three cases their efforts to have them discharged were successful. Stress was laid on the exploration of 12 relatives of deported or murdered psychiatric patients. The interviews were structured following the "oral history" concept and psychological interpretation was added. Focussing on infrafamiliar coping processes which were developed facing the NS-propaganda it was found that working-class people tended to see the victim in an idealized role. They showed a strong projective defence remembering Psychiatry as an integral part of nazi-system. Others saw their relatives as victims of war in general. Some of the relatives tried to repress the existence of surviving patients for a long time, a smaller group clinged to the idea of Euthanasia. Remarkable were the deep effects of eugenic nazi-propaganda on the following generation. The national socialistic violence concerning their fathers or mothers was often a total "tabu" and they nowadays still fear to get into contact with Psychiatry being aware of "suffering" from the same "bad blood" as their murdered relatives. Dealing with patients' resistance to therapeutic efforts in gerontopsychiatric wards their heritage of the nazi ear should be taken into account.
Jia Lee, PhD, RN
Conclusions: There were many differences in the perspectives of patients, families, physicians and nurses on advance directives. End-of-life care decisions should take the wishes of patients into account, and that such decisions should therefore be made before the patients lose the capacity to make them. To make well-informed decisions regarding future care, patients and families must be fully educated about advance directives and expected outcomes.
de Koning, M L Y; Fischer, K; de Laat, B; Huisman, A; Ninivaggi, M; Schutgens, R E G
Essentials It is unknown if hemophilia patients with atrial fibrillation need anticoagulation. Endogenous thrombin potentials (ETP) in hemophilia patients and patients on coumarins were compared. Severe hemophilia patients had comparable ETP to therapeutic international normalized ratio (INR). In non-severe hemophilia, 33% had higher ETP than therapeutic INR and may need anticoagulation. Click to hear Dr Negrier's perspective on global assays for assessing coagulation SUMMARY: Background It is unknown whether patients with hemophilia A with atrial fibrillation require treatment with vitamin K antagonists (VKAs) to the same extent as the normal population. Objective To compare hemostatic potential in hemophilia patients and patients on VKAs using thrombin generation (TG). Methods In this cross-sectional study, TG, initiated with 1pM tissue factor, was measured in 133 patients with severe (FVIII hemophilia A, 97 patients on a VKA with an international normalized ratio (INR) ≥ 1.5 and healthy controls. Endogenous thrombin potential (ETP) (nm*min) was compared according to FVIII level (hemophilia patients and patients on VKAs had lower median ETPs at 304 (196-449) and 176 (100-250), respectively. ETP was quite similar in severe hemophilia patients (185 [116-307]) and patients with a therapeutic INR (156 [90-225]). Compared with patients with therapeutic INR, ETP in patients with FVIII 1-19% and patients with FVIII 20-50% was higher at 296 (203-430) and 397 (219-632), respectively. All patients with therapeutic INR had an ETP hemophilia patients, 70% of patients with FVIII 1-19% and 52% of patients with FVIII 20-50% had an ETP hemophilia patients, TG was comparable to that in patients with a therapeutic INR. In one-third of non-severe hemophilia patients, TG was higher. These results suggest that anticoagulation therapy should be considered in a substantial proportion of non-severe hemophilia patients. © 2017 International Society on Thrombosis and Haemostasis.
Besseling, Joost; Huijgen, Roeland; Martin, Seth S.; Hutten, Barbara A.; Kastelein, John J. P.; Hovingh, G. Kees
We evaluated whether the severity of the familial hypercholesterolemia (FH) phenotype, i.e. increased levels of low-density lipoprotein cholesterol (LDL-C) and cardiovascular disease (CVD) risk, decreases in more distantly related patients within one family. We included heterozygous FH patients
Schure, Lidwien M.; van den Heuvel, Elisabeth T. P.; Stewart, Roy E.; Sanderman, Robbert; de Witte, Luc P.; Meyboom-de Jong, Betty
Objective: The objective of this study was to evaluate the strengths and weaknesses of a group support program and a home visiting program for family caregivers of stroke patients. It also examined the best fit between intervention variant and family caregiver and patient characteristics. van den
Schneider, Hanna; Hill, Susan
Background Self-management technologies, such as patient-controlled electronic health records (PCEHRs), have the potential to help people manage and cope with disease. Objective This study set out to investigate patient families’ lived experiences of working with a PCEHR. Methods We conducted a semistructured qualitative field study with patient families and clinicians at a children’s hospital in the UK that uses a PCEHR (Patients Know Best). All families were managing the health of a child with a serious chronic condition, who was typically under the care of multiple clinicians. As data gathering and analysis progressed, it became clear that while much of the literature assumes that patients are willing and waiting to take more responsibility for and control over their health management (eg, with PCEHRs), only a minority of participants in our study responded in this way. Their experiences with the PCEHR were diverse and strongly shaped by their coping styles. Theory on coping identifies a continuum of coping styles, from approach to avoidance oriented, and proposes that patients’ information needs depend on their style. Results We identified 3 groups of patient families and an outlier, distinguished by their coping style and their PCEHR use. We refer to the outlier as controlling (approach oriented, highly motivated to use PCEHR), and the 3 groups as collaborating (approach oriented, motivated to use PCEHR), cooperating (avoidance oriented, less motivated to use PCEHR), and avoiding (very avoidance oriented, not motivated to use PCEHR). Conclusions The PCEHR met the needs of controller and collaborators better than the needs of cooperators and avoiders. We draw on the Self-Determination Theory to propose ways in which a PCEHR design might better meet the needs of avoidance-oriented users. Further, we highlight the need for families to also relinquish control at times, and propose ways in which PCEHR design might support a better distribution of control
P. Mazzola; G. Marchisio; J. A. Astrachan
The Handbook of Research on Family Business provides a comprehensive first port of call for those wishing to survey progress in the theory and practice of family business research. In response to the extensive growth of family business as a topic of academic inquiry, the principal objective of the Handbook is to provide an authoritative and scholarly overview of current thinking in this multidisciplinary field. The contributors examine recent advances in the study of family business, whic...
Parker, Gordon B; Romano, Mia; Graham, Rebecca K; Ricciardi, Tahlia
We sought to quantify the prevalence and differential prevalence of a bipolar disorder among family members of patients with a bipolar I or II disorder. The sample comprised 1165 bipolar and 1041 unipolar patients, with the former then sub-typed as having either a bipolar I or II condition. Family history data was obtained via an online self-report tool. Prevalence of a family member having a bipolar disorder (of either sub-type) was distinctive (36.8%). Patients with a bipolar I disorder reported a slightly higher family history (41.2%) compared to patients with a bipolar II disorder (36.3%), and with both significantly higher than the rate of bipolar disorder in family members of unipolar depressed patients (18.5%). Findings support the view that bipolar disorder is heritable. The comparable rates in the two bipolar sub-types support the positioning of bipolar II disorder as a valid condition with strong genetic underpinnings.
Henrichs, Jens; Schenk, Jacqueline J.; Kok, Rianne; Ftitache, Bouchra; Schmidt, Henk G.; Hofman, Albert; Jaddoe, Vincent W. V.; Verhulst, Frank C.; Tiemeier, Henning
We investigated whether parental family stress during pregnancy is associated with cognitive functioning in early childhood in a population-based cohort (n = 3139). Family stress was assessed using the Family Assessment Device at the 20th week of pregnancy and was reported by mothers and fathers. Mothers completed the MacArthur Communicative…
Jaramillo-Sánchez, Rosalba; Espinosa-de Santillana, Irene; Espíndola-Jaramillo, Ilia Angélica
to determine the association between weight loss and family functioning. a cohort of 168 persons with overweight or obesity from 20-49 years, either sex, with no comorbidity was studied at the nutrition department. A sociodemographic data was obtained and FACES III instrument to measure family functioning was applied. At the third month a new assessment of the body mass index was measured. Descriptive statistical analysis and relative risk were done. obesity presented in 50.6 %, 59.53 % of them did not lose weight. Family dysfunction was present in 56.6 % of which 50 % did not lose weight. From 43.4 % of functional families, 9.52 % did not lose weight (p = 0.001). The probability or risk of not losing weight was to belong to a dysfunctional family is 4.03 % (CI = 2.60-6.25). A significant association was found between the variables: weight loss and family functioning. Belonging to a dysfunctional family may be a risk factor for not losing weight.
Full Text Available Background: Tuberculosis patients are registered in government clinics under Directly Observed Treatment Short-course (DOTS program in Chennai city catering to 4.34 million population. With the entire country geographically covered under the DOTS program, research into socioeconomic impact of TB on patients and their households is crucial for providing comprehensive patient-friendly TB services and to document the benefits of DOTS. Objective: To assess the social and economic impact of TB on patients registered under DOTS program and their families. Materials and Methods: A cross-sectional study of 300 TB patients was done using a pre-coded semi-quantitative questionnaire between March and June 2007 in all the Tuberculosis Units (TUs of Chennai city. Results: Social and economic impact was perceived by 69.0% and 30.3% patients, respectively. About 24.3% suffered from both social and economic impact, while 75% patients suffered from any one form of impact. Social impact was perceived by more female patients as compared to males (80.7% vs. 62%; P < 0.001. More patients with extra-pulmonary disease (44.4% and patients belonging to joint families (40.7% perceived economic impact (P < 0.05. Conclusion: After 8 years of DOTS implementation, the present study has shown that with the availability of DOTS, percentage of patients who mortgaged assets or took loans has reduced. Social impact of TB is still perceived by two-thirds of the patients (69%. Elimination or reduction of social stressors with specific, focused, and intense social support services, awareness generation, and counseling to patients and families need to be built into the program.
Ananthakrishnan, Ramya; Jeyaraj, Anita; Palani, Gopal; Sathiyasekaran, B W C
Tuberculosis patients are registered in government clinics under Directly Observed Treatment Short-course (DOTS) program in Chennai city catering to 4.34 million population. With the entire country geographically covered under the DOTS program, research into socioeconomic impact of TB on patients and their households is crucial for providing comprehensive patient-friendly TB services and to document the benefits of DOTS. To assess the social and economic impact of TB on patients registered under DOTS program and their families. A cross-sectional study of 300 TB patients was done using a pre-coded semi-quantitative questionnaire between March and June 2007 in all the Tuberculosis Units (TUs) of Chennai city. Social and economic impact was perceived by 69.0% and 30.3% patients, respectively. About 24.3% suffered from both social and economic impact, while 75% patients suffered from any one form of impact. Social impact was perceived by more female patients as compared to males (80.7% vs. 62%; P impact (P impact of TB is still perceived by two-thirds of the patients (69%). Elimination or reduction of social stressors with specific, focused, and intense social support services, awareness generation, and counseling to patients and families need to be built into the program.
Park, Boyoung; Kim, So Young; Shin, Ji-Yeon; Sanson-Fisher, Robert W; Shin, Dong Wook; Cho, Juhee; Park, Jong-Hyock
This study aimed to identify the prevalence and predictors of anxiety and depression among family caregivers of patients with cancer in Korea. A national, multicenter, cross-sectional survey was conducted with 897 family caregivers. The Hospital Anxiety and Depression Scale was used to assess anxiety and depression in patient-family caregiver dyads. The prevalence of anxiety in family caregivers was 38.1 %:20.3 % reported mild anxiety, 13.3 % reported moderate anxiety, and 4.6 % reported severe anxiety. The prevalence of depression was 82.2 %:40.4 % reported mild depression, 25.5 % reported moderate depression, and 16.3 % reported severe depression. Family caregivers who were younger, were caring for male patients, or had a low quality of life (QOL) in relation to three of the variables measured in the Korean Caregiver Quality of Life Index-Cancer (CQOLC-K): burden, disturbance, and financial concerns reported increased anxiety. Becoming unemployed during caregiving, being the spouse of a patient and having low QOL in relation to three of the variables measured by the CQOLC-K: burden, disturbance, and positive adaptation were associated with depression among family caregivers. The predictive validity of the selected variables were 0.861 (95 % CI: 0.844-0.892) for anxiety and 0.794 (95 % CI: 0.751-0.828) for depression. Family caregivers of patients with cancer experienced high levels of anxiety and depression. Socio-demographic factors and QOL were predictors of anxiety and depression in family caregivers.
Helenius, Dorte; Munk-Jørgensen, Povl; Steinhausen, Hans-Christoph
region. Psychiatric diagnoses were also obtained for parents, siblings, and offspring. A family load component was obtained by using various mixed regression models. Anxiety disorders occurred significantly more often in case than in control families. Having a mother, father, or a sibling......The present study investigated how often anxiety disorders with different ages of onset occurred in affected families compared to control families. Furthermore, the study addressed the impact of sex, region of residence, year and month of birth, and parental age at birth. The sample included N=1373......, provide further and solid evidence for the family aggregation of anxiety disorders....
Tušek-Bunc, Ksenija; Petek, Davorina
Family medicine plays an important role in quality of care (QoC) of coronary heart disease (CHD) patients. This study's aim was to determine the quality of secondary cardiovascular disease prevention in the everyday practice of family physicians. This study was observational cross-sectional. About 36 randomly selected family medicine practices stratified by size and location in Slovenia. CHD patients randomly selected from a patient register available in family medicine practices. The instrument for assessment of quality included a form for collecting data from medical records, a general practice assessment questionnaire and a patient questionnaire. QoC was defined by two composite variables, namely risk factor registration and CHD patient process of care, as the two care outcomes. In multivariate analysis, we performed multilevel regression analysis to identify the associations between QoC, the patient and the practice characteristics. The final sample included 423 CHD patients from 36 family medicine practices. Risk factor registration was associated with the practice organisation score (P = 0.004), practice size (P = 0.042), presence of comorbid atherosclerotic diseases (P = 0.043) and a lower age of CHD patients (P = 0.001). CHD patient process of care was associated with the practice organisation score (0.045) and a lower age of CHD patients (P = 0.035). The most important factors affecting the quality of CHD patient care were linked to the organisational characteristics of the family medicine practices.
Full Text Available Abstract Background Nearly 1 in 10 in the population experience fatigue of more than six months at any one time. Chronic fatigue is a common reason for consulting a general practitioner, and some patients report their symptoms are not taken seriously enough. A gap in perceptions may occur because doctors underestimate the impact of fatigue on patients' lives. The main aim of the study is to explore the economic impact of chronic fatigue in patients seeking help from general practitioners and to identify characteristics that explain variations in costs. Methods The design of study was a survey of patients presenting to general practitioners with unexplained chronic fatigue. The setting were 29 general practice surgeries located in the London and South Thames regions of the English National Health Service. Use of services over a six month period was measured and lost employment recorded. Regression models were used to identify factors that explained variations in these costs. Results The mean total cost of services and lost employment across the sample of 222 patients was £3878 for the six-month period. Formal services accounted for 13% of this figure, while lost employment accounted for 61% and informal care for 26%. The variation in the total costs was significantly related to factors linked to the severity of the condition and social functioning. Conclusions The economic costs generated by chronic fatigue are high and mostly borne by patients and their families. Enquiry about the functional consequences of fatigue on the social and occupational lives of patients may help doctors understand the impact of fatigue, and make patients feel better understood.
Full Text Available Introduction Schizophrenia patients are at greater risk of obesity, diabetes mellitus (DM, lipid abnormalities and cardiovascular disorders. The metabolic complications in patients are associated with several risk factors: family history of DM, lifestyle, smoking, dietary habits, physical inactivity, but also with antipsychotic medication. In literature, most publications have been focused on the effects of the second generation antipsychotics (SGA on glucose metabolism. However, less attention has been paid to abnormality in glucoregulation, patients with schizophrenia treated with the first generation antipsychotics (FGA. Objective The present study evaluated glucose metabolism in normal weight schizophrenia patients treated with FGA. METHOD The cross-sectional study included 18 patients (FGA treated and 20 healthy controls with neither group differences in sex distribution, age, nor in BMI. Inclusion criteria were normal BMI (20-25 kg/m2. The glucose levels, insulin levels and growth hormone levels during oral glucose tolerance test (OGTT were measured. Results Fasting glucose and insulin levels did not differ significantly between groups. Groups differed in OGTT glucose and insulin peak and area under curve (AUC, level of significance p<0.05 (patients vs. controls: glucose peak 8.3±0.4 vs.6.9±0.5 mmol/l, glucose AUC 758±28 vs. 640±36 mU/l/120 min; insulin peak in patients 92.7±15.6 mU/l; insulin AUC 6060±1016 mU/l/120 min, insulin peak in controls 47.9±6.5 mU/l; insulin AUC 2597±256 mU/l/120 min. Conclusion Patients with schizophrenia, although with normal body mass index, are at high risk of abnormal glucose regulation. Not only SGA increase the risk of impaired glucoregulation and metabolic syndrome, but this may also be due to FGA or schizophrenia per se. .
Chan, Zenobia C Y
When caring for a family as a unit, it is as crucial to communicate with the family members of a patient as it is with the patient. However, there is a lack of research on the views of nursing students on communicating with the family members of patients, and little has been mentioned in the nursing curriculum on this topic. The aim of this study was to explore nursing students' experiences of communicating with the family members of patients. A qualitative descriptive study. A total of 42 nursing students (21 undergraduate year-two students and 21 were master's year-one students) from one school of nursing in Hong Kong participated in in-depth individual interviews. Content analysis was adopted. The trustworthiness of this study was ensured by enhancing its credibility, confirmability, and dependability. Two main themes were discerned. The first, "inspirations gained from nursing student-family communication", included the following sub-themes: (a) responding to enquiries clearly, (b) avoiding sensitive topics, (c) listening to the patient's family, and (d) sharing one's own experiences. The second, "emotions aroused from nursing student-family communication", had the following sub-themes: (a) happiness, (b) anger, (c) sadness, and (d) anxiety. More studies on the perspectives of nursing students on communicating with family members should be conducted, to strengthen the contents and learning outcomes of nursing student-family communication in the existing nursing curriculum. Copyright © 2017 Elsevier Ltd. All rights reserved.
Haines, Kimberley J; Kelly, Phillipa; Fitzgerald, Peter; Skinner, Elizabeth H; Iwashyna, Theodore J
There is growing interest in patient and family participation in critical care-not just as part of the bedside, but as part of educational and management organization and infrastructure. This offers tremendous opportunities for change but carries risk to patients, families, and the institution. The objective is to provide a concise definitive review of patient and family organizational participation in critical care as a high-risk population and other vulnerable groups. A pragmatic, codesigned model for critical care is offered as a suggested approach for clinicians, researchers, and policy-makers. To inform this review, a systematic search of Ovid Medline, PubMed, and Embase was undertaken in April 2016 using the MeSH terms: patient participation and critical care. A second search was undertaken in PubMed using the terms: patient participation and organizational models to search for other examples of engagement in vulnerable populations. We explicitly did not seek to include discussions of bedside patient-family engagement or shared decision-making. Two reviewers screened citations independently. Included studies either actively partnered with patients and families or described a model of engagement in critical care and other vulnerable populations. Data or description of how patient and family engagement occurred and/or description of model were extracted into a standardized form. There was limited evidence of patient and family engagement in critical care although key recommendations can be drawn from included studies. Patient and family engagement is occurring in other vulnerable populations although there are few described models and none which address issues of risk. A model of patient and family engagement in critical care does not exist, and we propose a pragmatic, codesigned model that takes into account issues of psychologic safety in this population. Significant opportunity exists to document processes of engagement that reflect a changing paradigm of
Gallagher, Lisa M; Lagman, Ruth; Bates, Debbie; Edsall, Melissa; Eden, Patricia; Janaitis, Jessica; Rybicki, Lisa
Evidence shows that music therapy aids in symptom management and improves quality of life for palliative medicine and hospice patients. The majority of previous studies have addressed patient needs, while only a few addressed the needs of family members. The primary purpose of this study was to understand family members' perceptions of music therapy experienced by a relative in palliative medicine or hospice. Patient self-reported scales and music therapist assessment of change were also investigated. Patients scored their symptoms (pain, anxiety, depression, shortness of breath, and mood) before and after music therapy sessions. One family member present during the session assessed perceived effect on the patient's pain, anxiety, depression, shortness of breath, stress level, restlessness, comfort level, mood, and quality of life. The effect on family member's stress level, quality of life, and mood and helpfulness of the music therapy session for the patient and self were studied. Recommendations about future patient participation in music therapy and qualitative comments were also solicited. Fifty family member/patient dyads participated in the study. Family member perceptions were positive, with 82% of responders indicating improvement for self and patient in stress, mood, and quality of life; 80% rating the session as extremely helpful; and 100% of 49 recommending further music therapy sessions for the patient. Patients reported statistically significant improvement in pain, depression, distress, and mood scores. Family members of patients in palliative medicine and hospice settings reported an immediate positive impact of music therapy on the patient and on themselves. More research needs to be conducted to better understand the benefits of music therapy for family members.
Liu, Xiaowen; Cai, Hong; Yu, Lin; Huang, Hua; Long, Ziwen; Wang, Yanong
Family history of cancer is a risk factor for gastric cancer. In this study, we investigated the prognoses of gastric cancer patients with family history of cancer. A total of 1805 gastric cancer patients who underwent curative gastrectomy from 2000 to 2008 were evaluated. The clinicopathologic parameters and prognoses of gastric cancer patients with a positive family history (PFH) of cancer were compared with those with a negative family history (NFH). Of 1805 patients, 382 (21.2%) patients had a positive family history of cancer. Positive family history of cancer correlated with younger age, more frequent alcohol and tobacco use, worse differentiation, smaller tumor size, and more frequent tumor location in the lower 1/3 of the stomach. The prognoses of patients with a positive family history of cancer were better than that of patients with a negative family history. Family history of cancer independently correlated with better prognosis after curative gastrectomy in gastric cancer patients.
Watanabe, Koin; Kurose, Takeshi; Kitatani, Naomi; Yabe, Daisuke; Hishizawa, Masahiro; Hyo, Takanori; Seino, Yutaka
We investigated the role of family support in glycemic control by nutritional self-care behavior of Japanese patients with type 2 diabetes. One hundred twelve Japanese out-patients with type 2 diabetes were recruited for the study at Kansai Electric Power Hospital. Interviews were conducted and HbA1c and triglyceride levels were measured. HbA1c levels were significantly related to family nutritional support. Patients under 60 years old with family nutritional support showed significantly lower HbA1c than patients without family support (p1 week) showed similar outcomes in glycemic control. Patients who appreciate the support and follow the advice showed lower HbA1c (6.88 +/- 0.22%) than (7.43 +/- 0.23%) patients who appreciate the advice but sometimes feel emotional barriers. Family nutritional support is useful in improving metabolic outcome of diabetic patients. Self-care practice in disease management should be carefully adjusted to the family setting of type 2 diabetic patients. Emotional barriers to family support may affect the metabolic consequences, especially in the Japanese elderly.
Xiao, Ning; Zhu, Dan; Xiao, Shuiyuan
Numerous studies have confirmed that brain tumor patients and their family members frequently exhibit negative emotional reactions, such as anxiety and depression, during diagnosis and treatment of the disease. Family members experience increasing pressure as the year of survival of patient progress. The aim of this study was to investigate the effects of the continued psychological care (CPC) toward the brain tumor patients and their family members' emotions. The asynchronous clinical control trial was performed, and 162 brain tumor patients and their family members were divided into the control group and the intervention group. The control group was only performed the telephone follow-up toward the patients. Beside this way, the intervention group was performed the CPC toward the patients and their family member. The self-rating anxiety scale (SAS) and the self-rating depression scale (SDS) were used to measure the negative emotions of the patients and their family members, and the patients' treatment compliance and the incidence of seizures were compared. The SAS and SDS scores of the intervention group on the 14 days, 28 days and 3 months of the CPC were significantly lower than the control group (P family members.
Full Text Available Purpose: The discussion of a cancer diagnosis and prognosis often is difficult. This study explored the expectations of Tamil-speaking patients with cancer and their families with respect to receiving their cancer diagnosis in northern Sri Lanka. Methods: This exploratory, descriptive, qualitative study used semistructured interviews. Results: Thematic analysis identified two major themes: communication and information seeking. The findings illustrate a discrepancy between patient preference for direct disclosure of the diagnosis and that of families. Ninety-five percent of patients wanted medical staff to disclose their cancer diagnosis, whereas only 45% of family members believed that the diagnosis should be disclosed to the patient rather than to the family. Conclusion: Although patients and their family members’ views and expectations of the disclosure of diagnosis and prognosis differ, a majority of patients want to be told directly about their diagnosis rather than to learn of it from a relative. The findings are similar to the literature on other ethnic groups from Sri Lanka and studies from English-speaking developed countries. Therefore, the main questions are how to educate families and physicians about the benefits of open disclosure to patients and how to change culture. Results of this study along with a previous study call for the development of strategies and guidelines to improve societal views, educate patients and families, and train health professionals in the area of breaking bad news and discussing prognosis in the Sri Lankan setting.
Miyawaki, Christina E
This study is a cross-sectional investigation of caregiving practice patterns among Asian, Hispanic and non-Hispanic White American family caregivers of older adults across three immigrant generations. The 2009 California Health Interview Survey (CHIS) dataset was used, and 591 Asian, 989 Hispanic and 6537 non-Hispanic White American caregivers of older adults were selected. First, descriptive analyses of caregivers' characteristics, caregiving situations and practice patterns were examined by racial/ethnic groups and immigrant generations. Practice patterns measured were respite care use, hours and length of caregiving. Three hypotheses on caregiving patterns based on assimilation theory were tested and analyzed using logistic regression and generalized linear models by racial/ethnic groups and generations. Caregiving patterns of non-Hispanic White caregivers supported all three hypotheses regarding respite care use, caregiving hours and caregiving duration, showing less caregiving involvement in later generations. However, Asian and Hispanic counterparts showed mixed results. Third generation Asian and Hispanic caregivers used respite care the least and spent the most caregiving hours per week and had the longest caregiving duration compared to earlier generations. These caregiving patterns revealed underlying cultural values related to filial responsibility, even among later generations of caregivers of color. Findings suggest the importance of considering the cultural values of each racial/ethnic group regardless of generation when working with racially and ethnically diverse populations of family caregivers of older adults.
Alexsandro Ferreira dos SANTOS
Full Text Available ABSTRACT Objective To determine the association of a scored patient-generated Subjective Global Assessment with mortality and length of hospital stay in cancer patients. Methods Cross-sectional study carried out between July and September 2014 using secondary data collection using data from 366 medical records of patients admitted to a hospital recognized as a cancer center of excellence. The present study included patients with hospital stay over than or equal three days and minimum age of 20 years. The patient-generated Subjective Global Assessment scores were calculated and compared with the patients’ clinical and anthropometric characteristics and outcomes (death and long length of stay in hospital. Results Of the 366 patients evaluated, 36.0% were malnourished. The presence of malnutrition, according to the scored patient-generated Subjective Global Assessment, was statistically associated with the presence of metastasis (52.4%. On the other hand, malnutrition, according to the body mass index in adults (55.8% and in older elderly patients (54.2%, was associated with death (55.0%. The adjusted logistic regression model showed that the following factors were associated with prolonged hospitalization: early nutritional screening, presence of severe malnutrition, radiotherapy and chemotherapy, and surgical procedures. As for mortality, the associated factors were: male reproductive system tumor, presence of metastasis, clinical treatment, prolonged hospitalization, and the presence of some degree of malnutrition. Conclusion The patient-generated Subjective Global Assessment score is an important risk marker of prolonged hospitalization and mortality rates. It is a useful tool capable of circumventing significant biases in the nutritional evaluation of cancer patients.
Iacocca, Michael A.; Wang, Jian; Dron, Jacqueline S.; Robinson, John F.; McIntyre, Adam D.; Cao, Henian
Familial hypercholesterolemia (FH) is a heritable condition of severely elevated LDL cholesterol, caused predominantly by autosomal codominant mutations in the LDL receptor gene (LDLR). In providing a molecular diagnosis for FH, the current procedure often includes targeted next-generation sequencing (NGS) panels for the detection of small-scale DNA variants, followed by multiplex ligation-dependent probe amplification (MLPA) in LDLR for the detection of whole-exon copy number variants (CNVs). The latter is essential because ∼10% of FH cases are attributed to CNVs in LDLR; accounting for them decreases false negative findings. Here, we determined the potential of replacing MLPA with bioinformatic analysis applied to NGS data, which uses depth-of-coverage analysis as its principal method to identify whole-exon CNV events. In analysis of 388 FH patient samples, there was 100% concordance in LDLR CNV detection between these two methods: 38 reported CNVs identified by MLPA were also successfully detected by our NGS method, while 350 samples negative for CNVs by MLPA were also negative by NGS. This result suggests that MLPA can be removed from the routine diagnostic screening for FH, significantly reducing associated costs, resources, and analysis time, while promoting more widespread assessment of this important class of mutations across diagnostic laboratories. PMID:28874442
Kumar, Arun; Babu, Mohan; Kimberling, William J; Venkatesh, Conjeevaram P
Usher syndrome (USH) is a rare autosomal recessive disorder characterized by deafness and retinitis pigmentosa. The purpose of this study was to determine the genetic cause of USH in a four generation Indian family. Peripheral blood samples were collected from individuals for genomic DNA isolation. To determine the linkage of this family to known USH loci, microsatellite markers were selected from the candidate regions of known loci and used to genotype the family. Exon specific intronic primers for the MYO7A gene were used to amplify DNA samples from one affected individual from the family. PCR products were subsequently sequenced to detect mutation. PCR-SSCP analysis was used to determine if the mutation segregated with the disease in the family and was not present in 50 control individuals. All affected individuals had a classic USH type I (USH1) phenotype which included deafness, vestibular dysfunction and retinitis pigmentosa. Pedigree analysis suggested an autosomal recessive mode of inheritance of USH in the family. Haplotype analysis suggested linkage of this family to the USH1B locus on chromosome 11q. DNA sequence analysis of the entire coding region of the MYO7A gene showed a novel insertion mutation c.2663_2664insA in a homozygous state in all affected individuals, resulting in truncation of MYO7A protein. This is the first study from India which reports a novel MYO7A insertion mutation in a four generation USH family. The mutation is predicted to produce a truncated MYO7A protein. With the novel mutation reported here, the total number of USH causing mutations in the MYO7A gene described to date reaches to 75.
Fears, Scott C; Schür, Remmelt; Sjouwerman, Rachel; Service, Susan K; Araya, Carmen; Araya, Xinia; Bejarano, Julio; Knowles, Emma; Gomez-Makhinson, Juliana; Lopez, Maria C; Aldana, Ileana; Teshiba, Terri M; Abaryan, Zvart; Al-Sharif, Noor B; Navarro, Linda; Tishler, Todd A; Altshuler, Lori; Bartzokis, George; Escobar, Javier I; Glahn, David C; Thompson, Paul M; Lopez-Jaramillo, Carlos; Macaya, Gabriel; Molina, Julio; Reus, Victor I; Sabatti, Chiara; Cantor, Rita M; Freimer, Nelson B; Bearden, Carrie E
Recent theories regarding the pathophysiology of bipolar disorder suggest contributions of both neurodevelopmental and neurodegenerative processes. While structural neuroimaging studies indicate disease-associated neuroanatomical alterations, the behavioural correlates of these alterations have not been well characterized. Here, we investigated multi-generational families genetically enriched for bipolar disorder to: (i) characterize neurobehavioural correlates of neuroanatomical measures implicated in the pathophysiology of bipolar disorder; (ii) identify brain-behaviour associations that differ between diagnostic groups; (iii) identify neurocognitive traits that show evidence of accelerated ageing specifically in subjects with bipolar disorder; and (iv) identify brain-behaviour correlations that differ across the age span. Structural neuroimages and multi-dimensional assessments of temperament and neurocognition were acquired from 527 (153 bipolar disorder and 374 non-bipolar disorder) adults aged 18-87 years in 26 families with heavy genetic loading for bipolar disorder. We used linear regression models to identify significant brain-behaviour associations and test whether brain-behaviour relationships differed: (i) between diagnostic groups; and (ii) as a function of age. We found that total cortical and ventricular volume had the greatest number of significant behavioural associations, and included correlations with measures from multiple cognitive domains, particularly declarative and working memory and executive function. Cortical thickness measures, in contrast, showed more specific associations with declarative memory, letter fluency and processing speed tasks. While the majority of brain-behaviour relationships were similar across diagnostic groups, increased cortical thickness in ventrolateral prefrontal and parietal cortical regions was associated with better declarative memory only in bipolar disorder subjects, and not in non-bipolar disorder family
Shahvazi, Simin; Onvani, Shokouh; Heydari, Marziyeh; Mehrzad, Valiollah; Nadjarzadeh, Azadeh; Fallahzadeh, Hosseyn
Malnutrition is a common problem among cancer patients, usually occurs due to poor appetite, low food intake, and changes in body metabolism. The aim of this study is to determine the prevalence of malnutrition in patients receiving chemotherapy on an outpatient basis. This cross-sectional study conducted on 300 cancer patients referred to hospital. The prevalence of malnutrition among patients was assessed using the abridged scored patient-generated subjective global assessment (abPG-SGA) standard questionnaire. Moreover, patient's weight and 24 h dietary recall were measured. Descriptive statistics were used to present characteristics of patients and dietary recalls. For revealing the correlation, Spearman correlation was used. The average abPG-SGA score was 7.6 (standard deviation [SD] = 5.4) and 60.7% of patients were malnourished and required nutritional intervention. Patients mean age and mean duration of illness were 54.2 (SD = 14.7(years, 25 months, respectively. The most common complaint of patients included fatigue (51.3%), anorexia (43.3%), and dry mouth (41%). Reduction in food intake in past month was reported by 41.7% of patients. According to the high prevalence of cancers and increasing growth of them in recent years with regard to outpatient treatment development for cancer patients, using the abPG-SGA standard questionnaire by nutritionist or nurses can be effective to detect malnourished patients and reduce complications caused by disease.
Egbers, Lieke; Grotenhuis, Anne J; Aben, Katja K; Alfred Witjes, J; Kiemeney, Lambertus A; Vermeulen, Sita H
A history of urinary bladder cancer (UBC) in first-degree relatives increases UBC risk by twofold. The influence of positive family history on UBC prognosis is unknown. Here, we investigated association of first-degree UBC family history with clinicopathological characteristics and prognosis of UBC patients. Detailed clinical data of 1,465 non-muscle-invasive bladder cancer (NMIBC) and 250 muscle-invasive or metastatic bladder cancer (MIBC) patients, diagnosed from 1995 to 2010, were collected through medical file review. Competing risk analyses were used to compare recurrence-free survival (RFS) and progression-free survival (PFS) of NMIBC patients according to self-reported UBC family history. Overall survival in MIBC patients was estimated using Kaplan-Meier analysis. The added value of family history in prediction of NMIBC prognosis was quantified with Harrell's concordance-index. Hundred (6.8%) NMIBC and 14 (5.6%) MIBC patients reported UBC in first-degree relatives. Positive family history was statistically significantly associated with smaller tumor size and non-significantly with more favorable distribution of other tumor characteristics. In univariable analyses, positive family history correlated with longer RFS (p = 0.11) and PFS (p = 0.04). Hazard ratios for positive vs. negative family history after adjustment for clinicopathological characteristics were 0.75 (95% CI = 0.53-1.07) and 0.45 (95% CI = 0.18-1.12) for RFS and PFS, respectively. Five familial and 48 sporadic MIBC patients (Kaplan-Meier 10-year risk: 41% and 25%) died within 10 years. Family history did not improve the c-index of prediction models. This study shows that a first-degree family history of UBC is not clearly associated with NMIBC prognosis. Family history does not aid in prediction of NMIBC recurrence or progression. © 2014 The Authors. Published by Wiley Periodicals, Inc. on behalf of UICC.
Reinares, María; Bonnín, C Mar; Hidalgo-Mazzei, Diego; Colom, Francesc; Solé, Brisa; Jiménez, Esther; Torrent, Carla; Comes, Mercè; Martínez-Arán, Anabel; Sánchez-Moreno, José; Vieta, Eduard
Functional improvement has become one of the aims of the treatment of bipolar disorder. However, scant attention has been given to family functioning, even though it has a role in the illness outcome and is affected by the disorder. The aims of this study were to compare family functioning reported by euthymic patients with bipolar disorder and healthy controls; explore the level of congruence in the perception of family environment between patients with bipolar disorder and their relatives; and analyse the relationship between clinical variables and family functioning. The sample comprised 82 adult euthymic subjects with bipolar disorder, 82 family caregivers of these patients and 47 healthy controls. Participants completed the Family Environment Scale. Results showed moderate correlations and a mean pattern almost identical between relatives' and patients' reported scores in family functioning subscales. There were significant differences between patients and controls, favourable for the latter, in the subscales cohesion (pbipolar disorder and highlight the importance of family work. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.
Karlijn J Joling
Full Text Available Family caregivers of dementia patients are at increased risk of developing depression or anxiety. A multi-component program designed to mobilize support of family networks demonstrated effectiveness in decreasing depressive symptoms in caregivers. However, the impact of an intervention consisting solely of family meetings on depression and anxiety has not yet been evaluated. This study examines the preventive effects of family meetings for primary caregivers of community-dwelling dementia patients.A randomized multicenter trial was conducted among 192 primary caregivers of community dwelling dementia patients. Caregivers did not meet the diagnostic criteria for depressive or anxiety disorder at baseline. Participants were randomized to the family meetings intervention (n = 96 or usual care (n = 96 condition. The intervention consisted of two individual sessions and four family meetings which occurred once every 2 to 3 months for a year. Outcome measures after 12 months were the incidence of a clinical depressive or anxiety disorder and change in depressive and anxiety symptoms (primary outcomes, caregiver burden and quality of life (secondary outcomes. Intention-to-treat as well as per protocol analyses were performed.A substantial number of caregivers (72/192 developed a depressive or anxiety disorder within 12 months. The intervention was not superior to usual care either in reducing the risk of disorder onset (adjusted IRR 0.98; 95% CI 0.69 to 1.38 or in reducing depressive (randomization-by-time interaction coefficient = -1.40; 95% CI -3.91 to 1.10 or anxiety symptoms (randomization-by-time interaction coefficient = -0.55; 95% CI -1.59 to 0.49. The intervention did not reduce caregiver burden or their health related quality of life.This study did not demonstrate preventive effects of family meetings on the mental health of family caregivers. Further research should determine whether this intervention might be more beneficial
Kocovska, Marina Zdravevska; Ristevska, Svetlana Micevska; Nikolovski, Sasho; Jokic, Vesna Spasic
The purpose of this study was to evaluate the effective dose to family members of thyroid cancer and hyperthyroid patients treated with radioiodine 131; also to compare the results with dose constraints proposed by International Commission of Radiological Protection (ICRP) and Basic Safety Standards (BSS) of the International Atomic Energy Agency (IAEA). Material and methods: for estimation of effective doses at sixty family members of thirty thyroid cancer and thirty hyperthyroid patients treated with radioiodine 131, the thermoluminescent dosimeters, Model TLD 100, were used. Thyroid cancer patients were hospitalized for three days, while hyperthyroid patients were treated on out-patient basis. The family members wore thermoluminescent dosimeter in front of the torso for seven days. Results: The radiation doses to family members of thyroid cancer patients were well below recommended dose constraint of 1 mSv. The mean value of effective dose was 0.21 mSv (min 0.02 - max 0.51 mSv). Effective doses, higher than 1 mSv, were detected at 11 family members of hyperthyroid patients.. The mean value of effective dose at family members of hyperthyroid patients was 0.87 mSv (min 0.12 - max 6.79) Conclusion: After three days of hospitalization and detailed given oral and written instruction, thyroid carcinoma patients maintain not to exceed the proposed dose limits. Hyperthyroid patients present a greater radiation hazard than thyroid carcinoma patients. The estimated effective doses were higher than the effective doses at family members of thyroid carcinoma patients. These findings may be considered when establishing new national guidelines concerning radiation protection and release of patients after a treatment with radioiodine therapy.(Author)
Full Text Available Research question : What are the various areas and burden a family experiences due to presence of oral and oropharyngeal cancer patient. Objectives: 1. To identify the family burden like financial burden, disruption of routine activities and family leisure etc. 2. To study the severity of family burden experienced by the families of oral and oropharyngeal cancer patients. Study design: Case- control. Setting: Gujarat Cancer and Research Institute (G.C.R.I, Ahmedabad. Participants: 100 cases belonging to the diagnostic categories no. 140-46 of ICD â€"9 and 100 controls belonging to the diagnostic categories other than no. 140-46 of ICD-9 Statistical analysis: Proportions, Chi-square test and Z test. Results: Financial burden was observed in 36% of cases and 43% of controls had burden on the family. Out of 43% respondents reporting any burden, 36(83.72% were identified with severe burden.
Tang, Siew Tzuh; Chen, Cheryl Chia-Hui; Tang, Woung-Ru; Liu, Tsang-Wu
Patient-family caregiver congruence on preferred place of death not only increases the likelihood of dying at home but also contributes significantly to terminally ill cancer patients' quality of life. To examine the determinants of patient-family caregiver congruence on the preferred place of death in Taiwan. Patient-family caregiver dyads (n=1,108) were surveyed on preferences and needs for end-of-life (EOL) care. Determinants of congruence on preferences were identified by multivariate logistic regression. Patient-caregiver dyads achieved 78.1% agreement on the preferred place of death. The kappa coefficient of congruence was 0.55 (95% confidence interval [CI]=0.50, 0.60). The extent of patient-family caregiver congruence on preferred place of death increased with the patient's higher functional dependence (adjusted odds ratio [AOR] and 95% CI=1.04 [1.02, 1.05]), higher patient-rated importance for dying at preferred place of death (AOR [95% CI]=1.60 [1.43, 1.79]), and having a spousal caregiver (AOR [95% CI]=1.62 [1.14, 2.31]). Other determinants of patient-family caregiver congruence included patient age (AOR [95% CI]=1.01 [1.00, 1.03]), patient-family concordance on preferred EOL care options (AOR=1.68-1.73), patient knowledge of prognosis (AOR [95% CI]=0.68 [0.48, 0.97]), and impact of caregiving on the family caregiver's life (AOR [95% CI]=0.98 [0.96, 0.99]). Increasing patient-family congruence on preferred place of death not only requires knowledge of the patient's prognosis and advance planning by both parties but also depends on family caregivers endorsing patient preferences for EOL care options and ensuring that supporting patients dying at home does not create an intolerable burden for family caregivers. Copyright (c) 2010 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
Preising, Markus N.; Forster, Hedwig; Tan, H.; Lorenz, Birgit; de Jong, Paulus T. V. M.; Plomp, Astrid S.
To elucidate the molecular basis of oculocutaneous albinism with variable expressivity in a family from The Netherlands in which no consanguinity was reported. Three affected family members were screened for mutations in tyrosinase (TYR) and the pink-eye-dilution gene (P) by using SSCP. The
Nemova, Olga A.; Retivina, Veronika V.; Kutepova, Lubov I.; Vinnikova, Irina S.; Kuznetsova, Ekaterina A.
The paper considers the issue of functioning of the mechanism of formation and translation of values of labor in family. Fundamental labor values and main channels of their distribution are revealed based on empiric material. Family influence on motivation of today's Russian youth's labor behavior was determined. An intergenerational comparative…
Full Text Available Life quality of diabetic patients is always affected by psychosocial problems, physical disorders, and life style changes. It seems that the perceived social support could intervene in improving the life quality of these patients. The present study was carried out aiming to examine the relation between family social support and life quality of female patients with diabetes. This was a cross-sectional study. The statistical population included 173 diabetic females who were randomly selected from patients referred to Kermanshah diabetes research center. Data were collected using life quality questionnaire (Short Form-36 as well as perceived social support scale. The data analysis indicated that there is a significant correlation between family support and life quality of patients. Furthermore, concerning the components of life quality, there is a significant correlation between family social support and physical performance, physical limitation, tiredness, emotional health, social performance, pain, and general health of patients. However, no significant relation was found between family support and limitation of patients. Results showed that there is a direct relation between family support and the life quality in females with diabetes. Hence, it can be concluded that giving the family support to the female diabetic patients can increase their quality of life.
Full Text Available Objectives Family members are often cancer patients’ primary source of social and emotional support and make a major contribution to how well patients manage their illness. We compared the prevalence of depression in the family members of cancer patients and the general population. Methods This study used the data from the fourth, fifth, and sixth rounds of the Korea National Health and Nutrition Examination Survey. The variable of interest was the presence of a cohabitating cancer patient in the family and the dependent variable was the presence of diagnosed depression. Results The odds of having medically diagnosed depression in those with a cohabitating cancer patient in the family were significantly higher than among those who did not have cancer patients in their families (odds ratio [OR], 1.56; 95% confidence interval [CI], 1.12 to 2.17; p=0.009. The OR for females was 1.59, and this increase was statistically significant (95% CI, 1.09 to 2.31; p=0.02. Conclusions We need to invest more effort into diagnosing and managing depression in the family members of cancer patients. This will have an impact both on their quality of life and on the well-being of patients, as supporters and caregivers play an instrumental role in helping patients manage their illness.
Pilecki, Maciej Wojciech; J?zefik, Barbara
Background Disturbances in various elements of transgenerational family functioning patterns are not uncommon in studies of eating disorders. We examined the relationship between patients? perception of autonomy and intimacy in their families of origin and that of their parents in their own families of origin. Material/Methods The sample consisted of 112 girls who had a diagnosis of an eating disoder and their parents; 54 of the girls were diagnosed with anorexia nervosa restrictive subtype, ...
Mirsepassi, Zahra; Tabatabaee, Maryam; Sharifi, Vandad; Mottaghipour, Yasaman
Family and patient psychoeducation have demonstrated significant improvement in clinical and social outcomes for patients suffering from severe mental disorders and their families. However, these evidence-based practices are not widely implemented at service delivery level and into routine clinical practice, especially in less developed countries. The aim of this article is to report the processes of development and implementation of a psychoeducational service for patients with severe mental illnesses and their families in Iran. The program was developed at Roozbeh Hospital in Tehran, Iran. A group of clinicians worked on the development phase of the program and drafting the manuals. Then, a series of workshops and supervision sessions were held to train group leaders for implementation of the group psychoeducation for patients and families. In the pilot phase, the services were delivered to two groups of patients and families, and then the manual was revised based on the feedback from group leaders and participants. The program consisted of eight 90-minute weekly patient group sessions and 6 weekly multiple family group sessions. Two manuals for patient education (schizophrenia and bipolar disorder) were developed. Several information sheets were developed and distributed during different sessions of family and patient psychoeducation related to the content of each session. Despite providing the hospital clinicians with the information regarding these new services, less than 10% of the admitted patients were referred by their clinicians. Feasibility and sustainability of the program are affected by a number of factors. Low referral rate of clinicians, limited resources of the hospital, issues related to stigma and logistic issues are barriers in implementation of these services. Administrators' and clinicians' understanding of the importance of patient and family psychoeducation seems to be crucial in sustainability of such programs in routine service delivery.
Tramm, Ralph; Ilic, Dragan; Murphy, Kerry; Sheldrake, Jayne; Pellegrino, Vincent; Hodgson, Carol
To explore the experiences of family members of patients treated with extracorporeal membrane oxygenation. Sudden onset of an unexpected and severe illness is associated with an increased stress experience of family members. Only one study to date has explored the experience of family members of patients who are at high risk of dying and treated with extracorporeal membrane oxygenation. A qualitative descriptive research design was used. A total of 10 family members of patients treated with extracorporeal membrane oxygenation were recruited through a convenient sampling approach. Data were collected using open-ended semi-structured interviews. A six-step process was applied to analyse the data thematically. Four criteria were employed to evaluate methodological rigour. Family members of extracorporeal membrane oxygenation patients experienced psychological distress and strain during and after admission. Five main themes (Going Downhill, Intensive Care Unit Stress and Stressors, Carousel of Roles, Today and Advice) were identified. These themes were explored from the four roles of the Carousel of Roles theme (decision-maker, carer, manager and recorder) that participants experienced. Nurses and other staff involved in the care of extracorporeal membrane oxygenation patients must pay attention to individual needs of the family and activate all available support systems to help them cope with stress and strain. An information and recommendation guide for families and staff caring for extracorporeal membrane oxygenation patients was developed and needs to be applied cautiously to the individual clinical setting. © 2016 John Wiley & Sons Ltd.
Irma Okta Wardhani
Full Text Available Stroke is a cerebrovascular disease, it is brain function disorders associated with the disease of the blood vessels that supply the brain. The impact of stroke is paralysis. Family support is things that are needed to be considered in the treatment of stroke patients. It is very involved in the compliance rehabilitation of patients to prevent the re-occurrence of stroke. Characteristics of stroke patients may also affect the compliance rehabilitation. The purpose of this research is to determine the relationship between stroke patients characteristics and family support to compliance rehabilitation at the Medical Rehabilitation Unit RSU Haji Surabaya. This research was an analytic observational research with cross sectional design. The subjects of this research are taken using total population technique. The independent variables in this research is family support. The dependent variable is compliance rehabilitation. The results of this research are presented in the form of frequency distributions and calculate the strength of the relationship with Phi coefficient. The result of this research shows that there is a strong relationship between family support and compliance rehabilitation (r=0.582. There are weak relationship between ages (r=-0,027, gender (r=0,092, level of education (r= -0,295, work (r=0,098, and marital status (r=0,319. The conclusion is family support may affect compliance rehabilitation of stroke patients. It is recommended for health workers to provide counseling to improve family support in curing stroke patients. Keywords: depression, family support, compliance rehabilitation
El Jashi, Rima; Gustafson, Maria B; Jakobsen, Mette B
BACKGROUND: The development of hip dysplasia is associated with several risk factors. 1 of these risk factors is gender, since 80% of patients with symptomatic hip dysplasia are females. Another risk factor for hip dysplasia is familial predisposition of hip dysplasia. Several studies indicate...... that the risk of hip dysplasia is increased with familial prevalence of hip dysplasia. However, little is known about the association between the familial prevalence and gender and the development of hip dysplasia. PURPOSE: The aim of the study was to estimate the prevalence of hip dysplasia among relatives...... to Danish patients with hip dysplasia operated with periacetabular osteotomy (PAO), and the degree of relationship of affected family members. Furthermore, to assess the association between gender and family predisposition in the same group of patients. METHOD: The study is a cross-sectional study...
Bennich, Birgitte B; Røder, Michael E; Overgaard, Dorthe
changes and diabetes self-management. The purpose of this integrative review was to summarise and assess published studies on the intra-family perspective of supportive and non-supportive interactions in families with a type 2 diabetes patient. METHODS: Included in the review were published qualitative......BACKGROUND: Type 2 diabetes and its management affect the patient and the close family potentially causing either psychological distress or increased sense of responsibility and collaboration in these families. Interactions between patient and family play an important role in maintaining lifestyle...... of reference lists. Quality assessment, data extraction and analysis were undertaken on all included studies. RESULTS: We identified five eligible research papers. Employing content analysis three categories describing interactions were refined: Impact of practical action, impact of emotional involvement...
Aim: This study aimed at determining the awareness about family planning amongst pregnant women presenting to the antenatal clinic of Federal Medical Centre, Owo, Ondo State, Nigeria. Methodology: The study was conducted between December, 2007 and February, 2008 at the antenatal clinic of the hospital. Ethical ...
Data was collected using a structured questionnaire and family APGAR questionnaire. The diagnosis of hypertension was based on blood pressure (BP) threshold of 140/90 mmHg according to JNC VII guidelines definitions. Data was analyzed using Stata statistical software (Version 10). Results: The mean age and BP of ...
Kamiura, Yoichi; Hashimoto, Fumio; Yoneta, Minoru
We have discovered a new family of oxygen-related double donors [new thermal donors (NTD's)] generated around 450 °C in phosphorus-doped Czochralski silicon by combining deep-level transient spectroscopy with Hall measurements. This new family was well distinguished from the normal family of thermal donors (TD's) currently studied so far. Our results have shown that both families of thermal donors exhibit qualitatively the same kinetic behavior. Namely, as the annealing time increases, their ionization energy of levels continuously decrease with their densities increasing until the maxima and then become constant with their densities decreasing. However, there are significantly quantitative differences between the both families; NTD's have shallower levels, considerably smaller generation rates, and higher thermal stability than TD's. Sufficiently prolonged annealing for more than 105 min around 450 °C or short donor-killing annealing for 20 min at 650 °C completely annihilates TD's, leaving only NTD's, of which the most stable and therefore most shallow species have been suggested by our Hall measurements to have donor levels at 0.04 and 0.09 eV below the conduction-band edge. The density of interstitial oxygen still continues to decrease even after prolonged annealing for more than 105 min, where NTD's are present in a stable condition in a concentration of 1×1015 cm-3. NTD's may correlate with the NL10 electron paramagnetic resonance center because of similarities in their generation kinetics. We have suggested a hypothesis that NTD's have similar defect structures as TD's and that an unknown nucleus involved in the core of NTD's plays an essential role in lowering their ionization energy of levels and generation rates and also in stabilizing their donor activity.
Yoon, Seok-Joon; Kim, Jong-Sung; Jung, Jin-Gyu; Kim, Sung-Soo; Kim, Samyong
Higher caregiver burden is associated with poor quality of life among family caregivers. However, in Korea, very few studies have examined factors associated with caregiver burden. The present study investigated factors associated with caregiver burden among family caregivers of terminally ill Korean cancer patients, particularly modifiable factors as a potential target of intervention strategies. A cross-sectional study using self-administered questionnaires was performed. Sixty-four family caregivers of terminally ill cancer patients who were admitted to the hospice-palliative care unit of a university hospital in South Korea were included. To identify caregiver burden, the Caregiver Reaction Assessment scale (CRA) was used in this study. Time spent in providing care per day, number of visits per week from other family members, family functioning, and a positive subscale, self-esteem, of the CRA were deemed as modifiable factors. Other sociodemographic, caregiving characteristics of the subjects were non-modifiable factors. Longer time spent providing care per day, fewer weekly visits from other family members, poor family functioning, and low self-esteem were considered as modifiable factors associated with caregiver burden. Low monthly income and the spouse being the family caregiver were non-modifiable factors. Our study has practical significance in that it identifies modifiable factors that can be used to devise intervention strategies. Developing and applying such intervention strategies for alleviating the factors associated with high caregiver burden could be important for improving the quality of life of both patients and their families.
Patient- and family-centered care is a central tenet of nursing practice. This concept has evolved to include patient partnerships, patient engagement, and patient activation. This column differentiates these concepts and describes the core principles embedded in the overriding intention of ensuring that patients (and their families or significant others) are orchestrators of their health and their care plans. In this interview, Karen Drenkard, PhD, RN, FAAN, NEA-BC, CNO, of the GetWellNetwork, discusses work by the O'Neil Center as a leader in this area.
Nathan, Paul; Ahluwalia, Aneeta; Chorley, Wendy
Breast cancer is the most common cancer diagnosed in women, both in the UK and worldwide. A small proportion of women are at very high risk of breast cancer, having a particularly strong family history. The National Institute for Health and Clinical Excellence (NICE) has advised that practitioners should not, in most instances, actively seek to identify women with a family history of breast cancer. An audit was undertaken at an urban primary care practice of 15,000 patients, using a paper-based, self-administered questionnaire sent to patients identified with a personal history of breast cancer. The aim of this audit was to determine whether using targeted screening of relatives of patients with breast cancer to identify familial cancer risk is worthwhile in primary care. Since these patients might already expected to have been risk assessed following their initial diagnosis, this audit acts as a quality improvement exercise. The audit used a validated family history questionnaire and risk assessment tool as a screening approach for identifying and grading familial risk in line with the NICE guidelines, to guide referral to the familial cancer screening service. The response rate to family history questionnaires was 54 % and the majority of patients responded positively to their practitioner seeking to identify familial cancer risks in their family. Of the 57 returned questionnaires, over a half (54 %) contained pedigrees with individuals eligible for referral. Patients and their relatives who are often registered with the practice welcome the discussion. An appropriate referral can therefore be made. The findings suggest a role for primary care practitioners in the identification of those at higher familial risk. However integrated systems and processes need designing to facilitate this work.
Long, Ann C; Downey, Lois; Engelberg, Ruth A; Nielsen, Elizabeth; Ciechanowski, Paul; Curtis, J Randall
Achieving adequate response rates from family members of critically ill patients can be challenging, especially when assessing psychological symptoms. To identify factors associated with completion of surveys about psychological symptoms among family members of critically ill patients. Using data from a randomized trial of an intervention to improve communication between clinicians and families of critically ill patients, we examined patient-level and family-level predictors of the return of usable surveys at baseline, three months, and six months (n = 181, 171, and 155, respectively). Family-level predictors included baseline symptoms of psychological distress, decisional independence preference, and attachment style. We hypothesized that family with fewer symptoms of psychological distress, a preference for less decisional independence, and secure attachment style would be more likely to return questionnaires. We identified several predictors of the return of usable questionnaires. Better self-assessed family member health status was associated with a higher likelihood and stronger agreement with a support-seeking attachment style with a lower likelihood, of obtaining usable baseline surveys. At three months, family-level predictors of return of usable surveys included having usable baseline surveys, status as the patient's legal next of kin, and stronger agreement with a secure attachment style. The only predictor of receipt of surveys at six months was the presence of usable surveys at three months. We identified several predictors of the receipt of surveys assessing psychological symptoms in family of critically ill patients, including family member health status and attachment style. Using these characteristics to inform follow-up mailings and reminders may enhance response rates. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Lalwani, A K; Attaie, A; Randolph, F T; Deshmukh, D; Wang, C; Mhatre, A; Wilcox, E
Waardenburg syndrome (WS) is an autosomal-dominant neural crest cell disorder phenotypically characterized by hearing impairment and disturbance of pigmentation. A presence of dystopia canthorum is indicative of WS type 1, caused by loss of function mutation in the PAX3 gene. In contrast, type 2 WS (WS2) is characterized by normally placed medial canthi and is genetically heterogeneous; mutations in MITF (microphthalmia associated transcription factor) associated with WS2 have been identified in some but not all affected families. Here, we report on a three-generation Indian family with a point mutation in the MITF gene causing WS2. This mutation, initially reported in a Northern European family, creates a stop codon in exon 7 and is predicted to result in a truncated protein lacking the HLH-Zip or Zip structure necessary for normal interaction with its target DNA motif. Comparison of the phenotype between the two families demonstrates a significant difference in pigmentary disturbance of the eye. This family, with the first documented case of two unrelated WS2 families harboring identical mutations, provides additional evidence for the importance of genetic background on the clinical phenotype.
Background. The admission of a relative to an intensive care unit (ICU) is a stressful experience for family members. There has been limited research addressing this issue in Kigali, Rwanda. Objective. To explore the needs of patient family members admitted into an ICU in Kigali, Rwanda. Methods. This study used a ...
Al-Bahri, A; Al-Moundhri, M; Al-Mandhari, Z; Al-Azri, M
There are limited numbers of studies available in Middle Eastern Arabic countries regarding participation of family members in cancer treatment decision-making (TDM). The aim of this study was to evaluate the role of family members' in TDM among adult Omani cancer patients. A cross-sectional study was conducted in two main teaching hospitals. All adult Omani patients who were diagnosed with cancer and their nominated family members were invited to participate. A tool developed by Cancer Care Outcomes Research and Surveillance Consortium was used to identify the level of family involvement in TDM. A weighted kappa (k) was significant (p time of diagnosis (OR = 3.10; 95% CI: 1.37-7.03). Oncologists in Oman should be aware of the strong family involvement in TDM to allow a successful cancer treatment. © 2018 John Wiley & Sons Ltd.
Mahmoud, Sahar; Zaki, Rania A.
This study was a comparative study aiming to assess the extent of internalized stigma of mental illness among patients with schizophrenia & identify stigma as perceived by family members caring schizophrenic patients. The study was conducted in two settings 1st clinic was outpatient clinic for psychiatric patient affiliated to Abbasia…
Kessels, Koen; Eisinger, Joey D; Letteboer, Tom G; Offerhaus, G Johan A; Siersema, Peter D; Moons, Leon M G
To investigate whether sending a family history questionnaire to patients prior to undergoing colonoscopy results in an increased availability of family history and better genetic counseling. A questionnaire was mailed to patients before they underwent outpatient colonoscopy at a university hospital in 2013. These patients' additional characteristics and referral for genetic evaluation were retrieved from the electronic medical records. Patients undergoing inpatient coloboscopy, with confirmed hereditary colorectal cancer (CRC) or inflammatory bowel disease were excluded. All study patients from 2010 to 2013 were matched with the database of the genetics department to determine who consulted a geneticist. A total of 6163 patients underwent colonoscopy from 2010 to 2013. Of 1421 who underwent colonoscopy in 2013, 53 (3.7%) consulted a geneticist, while 75 (1.6%) of 4742 patients undergoing colonoscopy between 2010 and 2012 did so (P history was not recorded in the electronic medical records of 393 (40.3%). In 129 (32.8%), family history was obtained from the completed questionnaire. In 2013, 49 (60.5%) out of 81 patients referred for genetic counseling were referred based on their family history. Eight (9.9%) patients were referred based on the completed questionnaire. Screening for hereditary CRC in a population undergoing outpatient colonoscopy with a questionnaire sent by mail resulted in an increased availability of family histories and genetic counseling. © 2017 Chinese Medical Association Shanghai Branch, Chinese Society of Gastroenterology, Renji Hospital Affiliated to Shanghai Jiaotong University School of Medicine and John Wiley & Sons Australia, Ltd.
... Disease): A guide for patients and families after stem cell transplant The immune system is the body's tool ... and attacking them. When you receive a donor's stem cells (the “graft”), the stem cells recreate the donor's ...
... Infection: A Guide for Patients and Families after Stem Cell Transplant What is cytomegalovirus (CMV)? Cytomegalovirus (CMV), a ... weakened by medicines that you must take after stem cell transplant and by the transplant itself. Your body ...
Jansen, A. C. M.; van Aalst-Cohen, E. S.; Tanck, M. W.; Trip, M. D.; Lansberg, P. J.; Liem, A. H.; van Lennep, H. W. O. Roeters; Sijbrands, E. J. G.; Kastelein, J. J. P.
Objective. To determine the contribution of classical risk factors to the development of cardiovascular disease (CVD) in patients with heterozygous familial hypercholesterolaemia (FH). Design. A retrospective, multi-centre, cohort study. Extensive data were collected by scrutinizing medical records
Rerup, Sofie Aagaard; Bang, Lia E; Mogensen, Ulrik M
AIMS: Familial hypercholesterolemia (FH) is a common genetic disorder causing accelerated atherosclerosis and premature cardiovascular disease. The aim of this study was to examine the prevalence and prognostic significance of possible FH in patients with myocardial infarction (MI). METHODS...
ARTICLE. 44 SAJCC November 2016, Vol. 32, No. 2. The needs of family members of intensive care unit patients: A ... loved one will be survival, disability or death. .... the participants of this study (the constructivist paradigm, which was.
Chiang, Li-Chi; Chen, Wan-Chou; Dai, Yu-Tzu; Ho, Yi-Lwun
Telehealth care was developed to provide home-based monitoring and support for patients with chronic disease. The positive effects on physical outcome have been reported; however, more evidence is required concerning the effects on family caregivers and family function for heart failure patients transitioning from the hospital to home. To evaluate the effectiveness of nursing-led transitional care combining discharge plans and telehealth care on family caregiver burden, stress mastery and family function in family caregivers of heart failure patients compared to those receiving traditional discharge planning only. This is a quasi-experimental study design. Sixty-three patients with heart failure were assessed for eligibility and invited to participate in either telehealth care or standard care in a medical centre from May to October 2010. Three families refused to participate in data collection. Thirty families who chose telehealth care after discharge from the hospital to home comprised the experimental group; the others families receiving discharge planning only comprised the comparison group. Telenursing specialist provided the necessary family nursing interventions by 24-h remote monitoring of patients' health condition and counselling by telephone, helping the family caregivers successfully transition from hospital to home. Data on caregiver burden, stress mastery and family function were collected before discharge from the hospital and one month later at home. Effects of group, time, and group×time interaction were analysed using Mixed Model in SPSS (17.0). Family caregivers in both groups had significantly lower burden, higher stress mastery, and better family function at one-month follow-up compared to before discharge. The total score of caregiver burden, stress mastery and family function was significantly improved for the family caregivers in the experimental group compared to the comparison group at posttest. Two subscales of family function
Hamann, Steffen; Jensen, Peter Koch; Fledelius, Hans Callø
Amyloidogenic transthyretin (ATTR)-related familial amyloidotic polyneuropathy (FAP) is an autosomal-dominant hereditary disease characterised by slowly progressive peripheral sensorimotor and autonomic neuropathy and tissue involvement of the heart, kidneys and central nervous system. Secondary...... ATTR Val30Met mutation. After 11 years of ophthalmic follow-up best-corrected visual acuity was 20/100 in his seeing eye, which further had visual field findings suggestive of optic neuropathy. This was also the diagnosis underlying the preceding insidious full loss of vision in the fellow eye......, with colour Doppler imaging to support an ischaemic aetiology. To our knowledge, this is the first report of ischaemic optic neuropathy in this familial amyloid disorder....
Waleed M. Al Abed Raba
Full Text Available This research included collection and analysis of (2800 samples from four different neighborhoods in Tikrit over the seasons of the year to cover seasonal changes in the generation rate of domestic solid waste. The generation rate of domestic solid waste is (0.460 kg / person / day. The results also showed that summer season is the most season that produced solid waste (0.487 kg / person / day. While winter is the lowest season (0.422 kg / person / day. The results indicated that Friday and Saturday are the most producing days (0.629 , 0.557 kg / person / days, respectively. The results showed the impact of rural character of Aalam region in reducing the rate of generation of domestic solid waste as the rate of generation of the neighborhoods of the four studied areas was (0.460 kg / person / day. SPSS program using has been adopted as a method of statistical analysis to study the effect of family size and income level have on the generation rate in the city, where the results showed that family size adversely affects the generation rate of solid waste, also the lowest generation rate was recorded for families with high income level.
Kopparty, S N
Though the impact of social inequality on health conditions is widely known, its impact on the chronic and stigmatized disease, leprosy, has received little attention. Deformity sometimes leads to disabilities and to handicaps causing problems to the patient and his family. In this paper an attempt has been made to understand the impact of social inequality, prevalent in the form of the caste system in India on the deformed leprosy patients and on their families. This impact was examined in terms of the problems faced by the patients. A sample of 150 deformed patients and their families, drawn from two districts in Tamil Nadu, was selected for the study. About 57% of the deformed patients experienced their deformity as a handicap which caused social and economic problems while the rest did not. Of the three caste groups, the Lower Caste group experienced more severe economic problems while the Upper Caste group faced more social problems. The extent of acceptance of deformed patients in their family varied significantly among those facing and not facing problems due to their deformity. The deformed patients without any handicap were accepted in a large majority of their families (82%) regardless of their caste status. In contrast the deformed but handicapped patients were accepted differentially among the three caste groups with the Upper group accepting them in most of their families (80%) while in the Lower group much less number of families (54%) did. All the families of the deformed but not handicapped patients desired to keep their patients till their death irrespective of their caste status. On the contrary, while all the families in the Upper Caste group expressed their willingness to keep their handicapped patients in the family till their death, 10% in the Middle and 22% in the Lower Caste groups did not want to do so. This suggests the gradual marginalization, rejection and dehabilitation of the affected. Thus, one's caste status can be a broad indicator
Mirsoleymani, Seyed Reza; Rohani, Camelia; Matbouei, Mahsa; Nasiri, Malihe; Vasli, Parvaneh
Caregiver burden threatens the psychological, emotional, functional and even physical health of caregivers. The aims of this study were to determine caregiver burden and family distress and the relationship between them, also to explore predictors of caregiver burden in a sample of Iranian family caregivers of cancer patients. This is a cross-sectional study with correlational design. A total of 104 family caregivers of cancer patients were asked to respond to the Caregiver Burden Inventory (CBI) and the Family Distress Index (FDI) together with a sociodemographic questionnaire. For evaluating the relationship between CBI and FDI scores, the Pearson's product-moment correlation was used. In addition, multiple linear regression analysis was applied to explore the predictive factors of caregiver burden. A high burden was experienced by almost half of the caregivers (48.1%). The FDI mean score was 9.76 ± 5.40 ranged from 0 to 24. A strong positive correlation was found between the caregiver burden and family distress ( r = 0.76). Multiple linear regression results showed the predictive role of FDI score (β = 0.71, P = 0.001), patient's gender (β = -0.25, P = 0.001), and early cancer diagnosis (β =0.13, P = 0.027) in caregiver burden. They could explain 65% of variance in the level of burden in family caregivers. Family nurses should consider the caregivers burden and vulnerability of families with cancer patient, especially if the patient is a male or has a new diagnosis. They should also design special programs for the whole family as a system that family can adapt to the new situation.
Fé, Dario; Ashraf, Bilal; Greve-Pedersen, Morten
and abiotic stresses. The study is performed on 995 F2 families originated from the DLF breeding program. All families were genotyped by reduced representation sequencing. A total of 1,020,065 SNPs were detected and used for genomic prediction. First analyses, used for model testing, have been carried out...... on salt stress tolerance. Ryegrass families where sown in rockwool blocks (in four replicates) in greenhouse, and allowed to establish over 60 days using standard fertilization and watering. Three consecutive treatments, with increasing salt (NaCl) concentrations, were applied. Ten days after initiation...... of each treatment, the percentage of green matter was evaluated by visual scoring and by digital imaging. Preliminary analysis using GBLUP have identified a significant amount of genetic variance (individual heritabilities ranging between 0.20 and 0.40 and family heritabilities up to about 0.15). Genomic...
Intergenerational research in familial and non-familial contexts appears to be strongly influenced by the positivist traditions of sociology where top-down transmission models of intergenerational learning and development dominate thinking and research. This thesis uses an interpretivist approach framed in Vygotsky’s (1987) cultural-historical theory and contributes alternative perspectives and interpretations of intergenerational learning and development. The study explored the relations a...
In the following paper a conceptual framework of the owner’s responsibility is created in order to study the transgenerational legal-economic ownership in the family business. Responsible ownership involves a sense of accountability and entrepreneurship to some extent. However, legal and social responsibilities naturally supplement each other in the family firm. Owners by means of personal relationships and financial guarantees are responsible for carrying out daily business operations and ma...
Buddeberg-Fischer, B; Stamm, M; Buddeberg, C; Klaghofer, R
QUESTIONS UNDER STUDY: The present study aimed to investigate the differences between future family physicians, and physicians aspiring to other medical specialities, in terms of sociodemographic factors and variables concerning personality factors, career motivation, career success, importance of life goals and work-life balance; further, the stability in career choice of family physicians from medical school through to residency was evaluated. METHODS: Data reported are from four assessment...
Watanabe, E; Lee, J S; Kawakubo, K
Maternal employment has been shown to be associated with childhood overweight and obesity (Ow/Ob), but the presence of family members who care for children in place of the mothers might influence children's Ow/Ob and lifestyles. The influence of maternal employment on children's Ow/Ob should be examined together with the presence of caregivers such as grandparents. The effects of maternal employment and the presence of grandparents on lifestyles and Ow/Ob in Japanese pre-school children were investigated. Cross-sectional study on 2114 children aged 3-6 years who attended all childcare facilities in a city and primary caregivers was conducted. Children's weight and height, family environments (family members, maternal employment, single parent, number of siblings and parental Ow/Ob) and lifestyles (dietary, physical activity and sleeping habits) were surveyed using a self-administered questionnaire. Ow/Ob was defined by the International Obesity Task Force cut-offs. The eligible participants were 1765 children. The prevalence of Ow/Ob was 8.4% in boys and 9.9% in girls. Maternal employment was associated positively with irregular mealtimes, unfixed snacking times, bedtime after 10 p.m. and nighttime sleep duration of less than 10 h, whereas three-generation families were associated negatively with irregular mealtimes after adjustment for children's characteristics and family environments. Irregular mealtimes (OR (95% CI); 2.03 (1.36, 3.06)) and nighttime sleep duration of less than 10 h (1.96 (1.28, 3.01)) were associated with increased risks of being Ow/Ob. Both maternal employment and three-generation families were significantly associated with children's Ow/Ob. However, three-generation families maintained a significant association (1.59 (1.08, 2.35)) after adjustment for maternal employment. These study results suggest that the grandparents who care for pre-school children in place of mothers are more likely to contribute to childhood Ow/Ob than maternal
Haubek, Dorte; Gjørup, Hans; Jensen, Lillian Gryesten
Limited phenotypic variation of hypocalcified amelogenesis imperfecta in a danish five-generation family with a novel FAM83H nonsense mutation......Limited phenotypic variation of hypocalcified amelogenesis imperfecta in a danish five-generation family with a novel FAM83H nonsense mutation...
Hassankhani, Hadi; Soheili, Amin; Hosseinpour, Issa; Eivazi Ziaei, Jamal; Nahamin, Mina
Introduction: The overwhelming effects of cancer could be catastrophic for the patients and their family members, putting them at risk of experiencing uncertainty, loss, and an interruption in life. Also, it can influence their sense of meaning, a fundamental need equated with the purpose in life. Accordingly, this study aimed to compare the meaning in life (MiL) of patients with cancer and their family members. Methods: This descriptive comparative study was conducted on 400 patients with cancer and their family members admitted to university hospitals in Tabriz and Ardebil provinces, Iran. The participants were sampled conveniently and the Life Evaluation Questionnaire (LEQ) were used for collecting data analyzed through descriptive and inferential statistics in SPSS ver. 13 Software. Results: The mean score for the MiL of the patients with cancer and their family members was 119 (16.92) and 146.2 (17.07), respectively. There was a significant difference between patients with cancer and their family members in terms of MiL. Conclusion: The MiL of patients with cancer is lower than that of their family members, which indicates the need for further attention to the psychological processes and their modification in Iranian healthcare systems.
McCormick, Michael E; Ward, Erin; Roberson, David W; Shah, Rahul K; Stachler, Robert J; Brenner, Michael J
To report patient/family experiences and outcomes after tracheostomy International survey of patients and families with tracheostomy. Collaboration of the Patient Safety and Quality Improvement Committee of the American Academy of Otolaryngology-Head and Neck Surgery and the Global Tracheostomy Collaborative. A 50-item survey was developed with multistakeholder collaboration. The survey was disseminated via international social networks used by patients with a tracheostomy and their families. Qualitative and quantitative data were analyzed. Of 220 respondents, 90% cared for a pediatric patient with a tracheostomy. Only 48% of respondents felt "very prepared" at time of discharge, and 11% did not receive emergency preparedness training prior to discharge. Home nursing needs were inadequately met in 17% of families, with resulting difficulties shortly after discharge; 14% sought emergent care within 1 week of discharge. Nearly half of respondents indicated a desire to have met with a patient with a tracheostomy prior to surgery but were not offered that opportunity. Fragmented care or limited teamwork was reported by 32% of respondents, whereas tracheotomy care was described as "integrated" or "maximally integrated" for 67%. While many families report satisfaction with tracheostomy care, opportunities remain for improving care. This study highlights the importance of teaching, teamwork, and smoothing transition from the hospital. Potential quality improvement areas include standardizing tracheostomy teaching for routine and emergency needs and optimizing postdischarge support and coordination. Prior to surgery, connecting families to people with a tracheostomy may also be beneficial. © American Academy of Otolaryngology—Head and Neck Surgery Foundation 2015.
Ge, Lixia; Mordiffi, Siti Zubaidah
Caring for elderly cancer patients may cause multidimensional burden on family caregivers. Recognition of factors associated with caregiver burden is important for providing proactive support to caregivers at risk. The aim of this study was to identify factors associated with high caregiver burden among family caregivers of elderly cancer patients. A systematic search of 7 electronic databases was conducted from database inception to October 2014. The identified studies were screened, and full text was further assessed. The quality of included studies was assessed using a checklist, and relevant data were extracted using a predeveloped data extraction form. Best-evidence synthesis model was used for data synthesis. The search yielded a total of 3339 studies, and 7 studies involving 1233 family caregivers were included after screening and full assessment of 116 studies. Moderate evidence supported that younger caregivers, solid tumors, and assistance with patient's activities of daily living were significantly associated with high caregiver burden. Eighteen factors were supported by limited evidence, and 1 was a conflicting factor. The scientific literature to date proved that caregiver burden was commonly experienced by family caregivers of elderly cancer patients. The evidence indicated that family caregivers who were at younger age, caring for solid tumor patients, and providing assistance with patient's activities of daily living reported high caregiver burden. The data provide evidence in identifying family caregivers at high risk of high caregiver burden. More high-quality studies are needed to clarify and determine the estimates of the effects of individual factors.
Background Usher syndrome (USH) is an autosomal recessive genetically heterogeneous disorder with congenital sensorineural hearing impairment and retinitis pigmentosa (RP). We have identified a consanguineous Lebanese family with two affected members displaying progressive hearing loss, RP and cataracts, therefore clinically diagnosed as USH type 3 (USH3). Our study was aimed at the identification of the causative mutation in this USH3-like family. Methods Candidate loci were identified using genomewide SNP-array-based homozygosity mapping followed by targeted enrichment and next-generation sequencing. Results Using a capture array targeting the three identified homozygosity-by-descent regions on chromosomes 1q43-q44, 20p13-p12.2 and 20p11.23-q12, we identified a homozygous nonsense mutation, p.Arg65X, in ABHD12 segregating with the phenotype. Conclusion Mutations of ABHD12, an enzyme hydrolyzing an endocannabinoid lipid transmitter, cause PHARC (polyneuropathy, hearing loss, ataxia, retinitis pigmentosa, and early-onset cataract). After the identification of the ABHD12 mutation in this family, one patient underwent neurological examination which revealed ataxia, but no polyneuropathy. ABHD12 is not known to be related to the USH protein interactome. The phenotype of our patient represents a variant of PHARC, an entity that should be taken into account as differential diagnosis for USH3. Our study demonstrates the potential of comprehensive genetic analysis for improving the clinical diagnosis. PMID:22938382
Eisenberger, Tobias; Slim, Rima; Mansour, Ahmad; Nauck, Markus; Nürnberg, Gudrun; Nürnberg, Peter; Decker, Christian; Dafinger, Claudia; Ebermann, Inga; Bergmann, Carsten; Bolz, Hanno Jörn
Usher syndrome (USH) is an autosomal recessive genetically heterogeneous disorder with congenital sensorineural hearing impairment and retinitis pigmentosa (RP). We have identified a consanguineous Lebanese family with two affected members displaying progressive hearing loss, RP and cataracts, therefore clinically diagnosed as USH type 3 (USH3). Our study was aimed at the identification of the causative mutation in this USH3-like family. Candidate loci were identified using genomewide SNP-array-based homozygosity mapping followed by targeted enrichment and next-generation sequencing. Using a capture array targeting the three identified homozygosity-by-descent regions on chromosomes 1q43-q44, 20p13-p12.2 and 20p11.23-q12, we identified a homozygous nonsense mutation, p.Arg65X, in ABHD12 segregating with the phenotype. Mutations of ABHD12, an enzyme hydrolyzing an endocannabinoid lipid transmitter, cause PHARC (polyneuropathy, hearing loss, ataxia, retinitis pigmentosa, and early-onset cataract). After the identification of the ABHD12 mutation in this family, one patient underwent neurological examination which revealed ataxia, but no polyneuropathy. ABHD12 is not known to be related to the USH protein interactome. The phenotype of our patient represents a variant of PHARC, an entity that should be taken into account as differential diagnosis for USH3. Our study demonstrates the potential of comprehensive genetic analysis for improving the clinical diagnosis.
Full Text Available Abstract Background Usher syndrome (USH is an autosomal recessive genetically heterogeneous disorder with congenital sensorineural hearing impairment and retinitis pigmentosa (RP. We have identified a consanguineous Lebanese family with two affected members displaying progressive hearing loss, RP and cataracts, therefore clinically diagnosed as USH type 3 (USH3. Our study was aimed at the identification of the causative mutation in this USH3-like family. Methods Candidate loci were identified using genomewide SNP-array-based homozygosity mapping followed by targeted enrichment and next-generation sequencing. Results Using a capture array targeting the three identified homozygosity-by-descent regions on chromosomes 1q43-q44, 20p13-p12.2 and 20p11.23-q12, we identified a homozygous nonsense mutation, p.Arg65X, in ABHD12 segregating with the phenotype. Conclusion Mutations of ABHD12, an enzyme hydrolyzing an endocannabinoid lipid transmitter, cause PHARC (polyneuropathy, hearing loss, ataxia, retinitis pigmentosa, and early-onset cataract. After the identification of the ABHD12 mutation in this family, one patient underwent neurological examination which revealed ataxia, but no polyneuropathy. ABHD12 is not known to be related to the USH protein interactome. The phenotype of our patient represents a variant of PHARC, an entity that should be taken into account as differential diagnosis for USH3. Our study demonstrates the potential of comprehensive genetic analysis for improving the clinical diagnosis.
Carolina Novi Mustikarini
Full Text Available This study examined the effect of entrepreneurial action for the performance of the next generation using the sample of students who joined the Family Business Community. In this study, there is a high contribution given by the role of entrepreneurship education in preparing the next generation in the family business. In addition, entrepreneurship education is considered possible through the process of internalization of the leaning process that is going on. For example, it is noted that entrepreneurial action can have a significant effect on the performance of the organization. In the context of the family business and entrepreneurial education at the University of Ciputra, both variables (entrepreneurial action and individual performance are necessary to be tested and therefore, the researcher finds it possible to cary out a research that is supposed to have a contribution to the family business. This study uses a hierarchical regression analysis, to test the stages of the mediation process. The results showed that most of relationships mediate internalization Entrepreneurial Action and Individual Performance.
Moncusí Ferré, Albert
This paper aims to study the reconstruction of the souche family model through the memory of the persons belonging to the last generation who has fully lived its operation, more or less directly, in Els Ports de Morella. A synthesis of this model is analyzed as an ideal type, in order to later analyse more thoroughly the discourses on practices adjusted to this pattern and, secondly, the elements of tension arising from its application as an instrument of interpretation of reality. Finally, w...
Jacobsen, Henrik B; Reme, Silje Endresen; Sembajwe, Grace; Hopcia, Karen; Stoddard, Anne M; Kenwood, Christopher; Stiles, Tore C; Sorensen, Glorian; Buxton, Orfeu M
This study examined whether work-family conflict was associated with sleep deficiencies, both cross-sectionally and longitudinally. In this two-phase study, a workplace health survey was completed by a cohort of patient care workers (n = 1,572). Additional data were collected 2 years later from a subsample of the original respondents (n = 102). Self-reported measures included work-family conflict, workplace factors, and sleep outcomes. The participants were 90% women, with a mean age of 41 ± 11.7 years. At baseline, after adjusting for covariates, higher levels of work-family conflict were significantly associated with sleep deficiency. Higher levels of work-family conflict also predicted sleep insufficiency nearly 2 years later. The first study to determine the predictive association between work-family conflict and sleep deficiency suggests that future sleep interventions should include a specific focus on work-family conflict. Copyright 2014, SLACK Incorporated.
Febres, Jeniimarie; Rossi, Rita; Gaudiano, Brandon A; Miller, Ivan W
Previous research suggests that depression and family functioning are related and that women and men may differ in how they respond to and cope with depression. Significantly less attention has been paid to whether sex moderates the relationship between family functioning and depression. In the current study, the relationship between depression severity and perceived family functioning, both generally and in specific areas, was examined in women and men (N = 117) hospitalized with major depression. The level of depression severity was not significantly different in men and in women. Correlations between depression severity and most domains of family functioning were significant and positive for men only. Furthermore, sex statistically moderated the associations between depression severity and family functioning in the areas of problem solving, communication, affective responsiveness, and behavior control. The implications for the assessment and treatment of family dysfunction in severely depressed patients are discussed.
change in their behavior, enhances their problem-solving skills, brings about personal and ... problems, such as strained facilitator-student relationship and logistic problems, encountered during the writing of patient studies, should be addressed. ..... of specific advantages that are a by-product of a patient study, for example ...
BACKGROUND: Caring for patients with chronic medical and psychiatric disorders is associated with significant burden. However little is known about the burden experience by caregivers of patients with epilepsy in Nigeria. The objective of this study, therefore, was to assess the level and correlates of burden among ...
Full Text Available Background. The admission of a relative to an intensive care unit (ICU is a stressful experience for family members. There has been limited research addressing this issue in Kigali, Rwanda.Objective. To explore the needs of patient family members admitted into an ICU in Kigali, Rwanda.Methods. This study used a quantitative exploratory design focused on exploring the needs of patient family members in ICU at one hospital in Kigali, Rwanda. Family members (N=40 were recruited using the convenience sampling strategy. The Critical Care Family Needs Inventory was used to collect relevant data.Results. The participants identified various needs to be met for the family during the patientâ€™s admission in ICU. The most important was the need for assurance, followed by the need for comfort, information, proximity and lastly support. Three additional needs specific to this sample group were also identified, related to resource constraints present in the hospital where the study was carried out.Conclusion. These results offer insight for nurses and other healthcare professionals as to what the important needs are that must be considered for the patient family members in ICUs within a resource-constrained environment.
Longo, Lianne; Slater, Serena
Being diagnosed with a metastatic brain tumour can be devastating as it is characterized by very low cure rates, as well as significant morbidity and mortality. Given the poor life expectancy and progressive disability that ensues, patients and family members experience much turmoil, which includes losses that bring about changes to family roles, routines and relationships. Crisis and conflict are common during such major disruptions to a family system, as individual members attempt to make sense of the illness experience based on cultural and spiritual beliefs, past experiences and personal philosophies. It is imperative health care providers strive towards increased awareness and knowledge of how culture affects the overall experience of illness and death in order to help create a mutually satisfactory care plan. Providing culturally-competent care entails the use of proper communication skills to facilitate the exploration of patient and family perspectives and allows for mutual decision making. A case study will illustrate the challenges encountered in providing culturally-competent care to a woman with brain cancer and her family. As the patient's health declined, the family entered into a state of crisis where communication between family members and health care professionals was strained; leading to conflict and sub-optimal outcomes. This paper will address the ethical dilemma of providing culturally-competent care when a patient's safety is at risk, and the nursing implications of upholding best practices in the context of differing beliefs and priorities.
Ganiou Tidjani, K; Ailal, F; Najib, J; Bellanné-Chantelot, C; Donadieu, J; Bousfiha, A A
A 12-year-old daughter of consanguineous Moroccan parents was diagnosed with cyclic neutropenia, based on a combination of recurrent gingivostomatitis, a fluctuating neutrophil count, and several episodes of severe neutropenia. No ELA2 gene mutations were found. At age 19 years she presented with edema of the limbs, proteinuria and renal failure. Renal amyloidosis AA was diagnosed by biopsy. Gene mutations associated with family Mediterranean fever (FMF) were sought, and a homozygous mutation (M694V) was found in the MFEV gene. This is the novel finding of FMF that masqueraded as cyclic neutropenia. (c) 2008 Wiley-Liss, Inc.
Damghi, Nada; Khoudri, Ibtissam; Oualili, Latifa; Abidi, Khalid; Madani, Naoufel; Zeggwagh, Amine Ali; Abouqal, Redouane
Meeting the needs of patients' family members becomes an essential part of responsibilities of intensive care unit physicians. The aim of this study was to evaluate the satisfaction of patients' family members using the Arabic version of the Society of Critical Care Medicine's Family Needs Assessment questionnaire and to assess the predictors of family satisfaction using the classification and regression tree method. The authors conducted a prospective study. This study was conducted at a 12-bed medical intensive care unit in Morocco. Family representatives (n = 194) of consecutive patients with a length of stay >48 hrs were included in the study. Intervention was the Society of Critical Care Medicine's Family Needs Assessment questionnaire. Demographic data for relatives included age, gender, relationship with patients, education level, and intensive care unit commuting time. Clinical data for patients included age, gender, diagnoses, intensive care unit length of stay, Acute Physiology and Chronic Health Evaluation, MacCabe index, Therapeutic Interventioning Scoring System, and mechanical ventilation. The Arabic version of the Society of Critical Care Medicine's Family Needs Assessment questionnaire was administered between the third and fifth days after admission. Of family representatives, 81% declared being satisfied with information provided by physicians, 27% would like more information about the diagnosis, 30% about prognosis, and 45% about treatment. In univariate analysis, family satisfaction (small Society of Critical Care Medicine's Family Needs Assessment questionnaire score) increased with a lower family education level (p = .005), when the information was given by a senior physician (p = .014), and when the Society of Critical Care Medicine's Family Needs Assessment questionnaire was administered by an investigator (p = .002). Multivariate analysis (classification and regression tree) showed that the education level was the predominant factor
Iglar, Karl; Murdoch, Stuart; Meaney, Christopher; Krueger, Paul
To determine the number of patient visits, patient demographic information, and diagnoses in an urban ambulatory care setting in a family medicine residency program, and assess the correlation between the number of patient visits and residents' in-training examination (ITE) scores. Retrospective analysis of data from resident practice profiles, electronic medical records, and residents' final ITE scores. Family medicine teaching unit in a community hospital in Barrie, Ont. Practice profile data were from family medicine residents enrolled in the program from July 1, 2013, to June 30, 2014, and electronic medical record and ITE data were from those enrolled in the program from July 1, 2010, to June 30, 2015. Number of patient visits, patient characteristics (eg, sex, age), priority topics addressed in clinic, resident characteristics (eg, age, sex, level of residency), and residents' final ITE scores. Between July 1, 2013, and June 30, 2014, there were 11 115 patient visits. First-year residents had a mean of 5.48 patient visits per clinic, and second-year residents had a mean of 5.98 patient visits per clinic. A Pearson correlation coefficient of 0.68 was found to exist between the number of patients seen and the final ITE scores, with a 10.5% difference in mean score between residents who had 1251 or more visits and those who had 1150 or fewer visits. Three diagnoses (ie, epistaxis, meningitis, and neck pain) deemed important for Certification by the College of Family Physicians of Canada were not seen by any of the residents in clinic. There is a moderate correlation between the number of patients seen by residents in ambulatory care and ITE scores in family medicine. It is important to assess patients' demographic information and diagnoses made in resident practices to ensure an adequate clinical experience. Copyright© the College of Family Physicians of Canada.
Full Text Available Background: HIV testing for family members of HIV-positive patients may enhance disclosure of status of spouses, encourage family social support and improve access to HIV services. Objective was to employ the approach of routine HIV testing to determine the prevalence of HIV among family members of both HIV positive and negative patients on admission in a federal HIV treatment designated hospital in Western Nigeria Methodology: This prospective study was conducted between January 2006 and June 2009. Ethical clearance was obtained from the Research and Ethics committee of the hospital prior to the study. Informed consent was obtained from each participant. HIV testing was offered to consenting family members of HIV positive and negative patients on admission. The family members included spouses, children of patients, parents of paediatric patients and other family members. Analysis was done in frequencies and percentages Results: 162 family members of 184 patients were tested. Spouses were, 81 (50.0%; fathers, 14 (8.6%; mothers, 20 (12.3%; children, 19 (11.7% and others family members, 28 (17.3%. 151 (93.2% of testers were first timers. Majority of those tested (82.1% had post-test counseling. The overall HIV prevalence was 12.3% (20/162. HIV prevalence within different family members was 14.8% (12/81, 20% (4/20, 7.1% (1/14, 10.5% (2/19 and 3.6% (1/28 for spouses, mothers, fathers, children and others respectively.In addition, the prevalence of HIV among family members of HIV positive and negative patients was 15.6% (14/90 and 8.3% (6/72 respectively. Of 12 spouses that were positive, 7 (13.5% were HIV-discordant; and in 71.4% (5/7 of discordant couples, the spouse was positive while the patient on admission was negative. Conclusion: The results indicate that routine HIV testing of family members of patients on admission is a strategy for identification of vast number of HIV infected persons. This method is not only innovative, but also a novel
Steinhausen, Hans-Christoph; Jakobsen, Helle; Helenius, Dorte; Munk-Jørgensen, Povl; Strober, Michael
This nation-wide register-based study investigated how often anorexia nervosa (AN) and co-morbid disorders occur in affected families compared with control families. Furthermore, the study addressed the impact of sex, year of birth, and degree of urbanization in terms of risk factors. A total of N = 2,370 child and adolescent psychiatric subjects born between 1951 and 1996 and registered in the Danish Psychiatric Central Research Register (DPCRR) had any mental disorder before the age of 18 and developed AN at some point during their life-time. In addition, N = 7,035 controls without any psychiatric diagnosis before age 18 and matched for age, sex, and residential region were included. Psychiatric diagnoses were also obtained on the first-degree relatives as a part of the Danish Three Generation Study (3GS). A family load component was obtained by using various mixed regression models. AN occurred significantly more often in case than in control families. AN Risk factors included having a sibling with AN, affective disorders in family members, and co-morbid affective, anxiety, obsessive-compulsive, personality, or substance use disorders. Furthermore, female sex, and ascending year of birth were significantly associated with having AN. Urbanization was not related to the family load of AN and case-relatives did not develop AN earlier than control relatives. These findings based on a very large and representative dataset provide evidence for the family aggregation and further risk factors in AN. © 2014 Wiley Periodicals, Inc.
Ruhee, Divya; Mahomoodally, Fawzi
Notoriously, the island of Mauritius has one of the highest prevalence of diabetes in the world. Management of the disease is very important and family meals are undoubtedly beneficial to patients as they promote the development of healthy eating behaviours and food choices. This study has aimed to probe into potential relationship(s) between family meal frequency and individual dietary intake among diabetic patients and to establish whether family cohesion may be a plausible mediator of this relationship. A cross-sectional survey was carried out with a random sample of 384 diabetic patients. The Family Adaptability and Cohesion Evaluation Scale III was used to obtain information on two general aspects of family functioning, that is, cohesiveness and adaptability. Chi-squared (χ (2)) tests, independent sample t-tests and one-way ANOVA were used to determine statistical significance. Pearson correlation was used to examine associations between family meal frequency, individual dietary intake and family cohesion. Hierarchical linear regression models were performed for the mediation analysis. Family meal frequency (breakfast, lunch and dinner) was observed to be positively associated with intake of fish, raw vegetables, dried and fresh fruits, low-fat milk, cheese, yogurt, nuts and light butter and negatively associated with intake of red meat, white rice, white bread, whole egg fried, chocolates, fried cakes, burgers, chips, and fried noodles/rice. Average mediation (52.6 %) was indicated by family cohesion for the association between family meal frequency and individual dietary intake among diabetic patients. Sobel's test further confirmed the trend towards complete mediation (z = 15.4; P relationship between family meal frequency and individual dietary intake among diabetic patients was recorded. The present study is one of the few studies that have examined family cohesion as a mediator of the relationship and to our best knowledge is the first work to
Pratt, Keeley J; Ferriby, Megan; Noria, Sabrena; Skelton, Joseph; Taylor, Christopher; Needleman, Bradley
The purpose of this study is to describe the associations between bariatric surgery patients' perspectives of their child's weight status, family support for eating and exercise behavior change, and family structure and functioning. A cross-sectional descriptive design with pre- and postsurgery (N = 224) patients was used. Demographics, perceptions of child weight status, family support for eating habits and exercise, and family functioning were assessed from patients at a University Bariatric Clinic. Patients who perceived their child to be overweight/obese reported more impaired family functioning, less family exercise participation, and more discouragement for eating habit change in the family compared to patients who did not perceive their child to be overweight/obese. Single parents more often perceived their children to be overweight/obese, and had more impaired family functioning, and less support for changing eating habits and family exercise participation. Patients with impaired family functioning reported less support for changing eating habits and family exercise participation. Bariatric patients who perceived their child to be overweight/obese and identified as single parents reported more impaired family functioning and less support for eating habits and family participation in exercise. Assessing pre- and postsurgery measures from parents and children will allow the further identification of relationship variables that can be targeted to promote positive family changes that benefit parents and children long-term. (PsycINFO Database Record (c) 2018 APA, all rights reserved).
Rha, Sun Young; Park, Yeonhee; Song, Su Kyung; Lee, Chung Eun; Lee, Jiyeon
Family caregivers of cancer patients become responsible for many elements of cancer care, usually without preparation or training in provision of care. Their efforts of care generate caregiving burden, which could deteriorate caregivers' quality of life (QOL). A secondary data analysis of a cross-sectional descriptive study was conducted to describe the influence of caregiving burden on the QOL of family caregivers of cancer patients with consideration of correlates (N = 212). The Korean versions of Zarit Burden Interview and the World Health Organization QOL BREF were used. Multiple regression analyses were applied to analyze the relationship between the caregiving burden and QOL. Caregiving burden explained 30.3% of variance of the QOL (β = -0.534, p < 0.001). Caregivers caring for patients with functional deterioration experienced higher burden. Caregivers providing care for hospitalized patients demonstrated lower QOL. The caregiver's educational level was a positively contributing factor for the QOL. Caregiving burden was the influential, negatively affecting factor for the QOL. Assessment of caregiving burden with special attention being paid to caregivers caring for patients with functional decline would help to identify caregivers in need of support. Supportive care needs to be sought to alleviate caregiving burden and improve the QOL of caregivers, especially for the caregivers of hospitalized patients. Copyright © 2015 Elsevier Ltd. All rights reserved.
Azzani, Meram; Yahya, Abqariyah; Roslani, April Camilla; Su, Tin Tin
This study aimed to estimate the cost of colorectal cancer (CRC) management and to explore the prevalence and determinants of catastrophic health expenditure (CHE) among CRC patients and their families arising from the costs of CRC management. Data were collected prospectively from 138 CRC patients. Patients were interviewed by using a structured questionnaire at the time of the diagnosis, then at 6 months and 12 months following diagnosis. Simple descriptive methods and multivariate binary logistic regression were used in the analysis. The mean cost of managing CRC was RM8306.9 (US$2595.9), and 47.8% of patients' families experienced CHE. The main determinants of CHE were the economic status of the family and the likelihood of the patient undergoing surgery. The results of this study strongly suggest that stakeholders and policy makers should provide individuals with financial protection against the consequences of cancer, a costly illness that often requires prolonged treatment.
Çengel-Kültür, S Ebru; Akdemir, Devrim; Saltık-Temizel, İnci N
The study aimed to evaluate the differences between groups of encopresis patients with constipation and without constipation. The Symptom Checklist- 90-Revised, the COPE Questionnaire, the Relationship Scales Questionnaire, the McMaster Family Assessment Device and the Parenting Style Scale were used to evaluate, respectively, maternal psychiatric symptoms, coping abilities, attachment style, family functioning and children's perceptions of parenting behaviors. Psychiatric diagnoses were evaluated using the K-SADS. A higher level of maternal psychiatric symptoms, impaired role and affective involvement functioning of the family and less psychological autonomy were observed in the group of encopresis patients with constipation than in the group of encopresis patients without constipation. No significant differences were found between the groups in psychiatric comorbidities, maternal coping abilities and attachment style. The two groups had a similar pattern of comorbid psychiatric disorders and maternal psychological factors, although some familial factors-related mainly to parental authority-were differentiated in the encopresis with constipation group.
Full Text Available This nation-wide register-based study investigated how often phobic disorders (PHO and co-morbid disorders occur in affected families compared to control families. Furthermore, the study addressed the impact of sex, year of birth, and degree of urbanization in terms of risk factors.A total of N = 746 child and adolescent psychiatric participants born between 1969 and 1986 and registered in the Danish Psychiatric Central Research Register (DPCRR with a diagnosis of a mental disorder before the age of 18, and developed PHO at some point during their life-time until a maximum age of 40 years were included. In addition, N = 2229 controls without any diagnosis of mental disorders before age 18 and that were matched for age, sex, and residential region were included. Diagnoses of mental disorders were also obtained from the first- degree relatives as a part of the Danish Three Generation Study (3GS. A family load component was obtained by using various mixed regression models.PHO occurred significantly more often in case than in control families, in particular, in mothers and siblings. Substance use disorders (SUD, Depressive disorders (DEP, anxiety disorders (ANX and personality disorders (PERS in the family were significantly associated with specific phobia in the case-probands. After controlling for various mental disorders comorbid to PHO it was found that some of the family transmission could be caused by various other mental disorders in family members rather than the PHO itself. Female sex and more recent year of birth were further risk factors while region of residence was not related to the manifestation of PHO. Case-relatives did not develop PHO earlier than control relatives. After adjusting for various additional explanatory variables, the family load explained only 0.0013% of the variance in the manifestation of PHO in the case-probands.These findings, based on a very large and representative dataset, provide evidence for the family
Fomby, Paula; James-Hawkins, Laurie; Mollborn, Stefanie
Overall, children born to teen parents experience disadvantaged cognitive achievement at school entry compared to children born to older parents. However, within this population there is variation, with a significant fraction of teen parents’ children acquiring adequate preparation for school entry during early childhood. We ask whether the family background of teen parents explains this variation. We use data on children born to teen mothers from three waves of the Early Childhood Longitudinal Study-Birth Cohort (N~700) to study the association of family background with children's standardized reading and mathematics achievement scores at kindergarten entry. When neither maternal grandparent has completed high school, children's scores on standardized assessments of math and reading achievement are one-quarter to one-third of a standard deviation lower compared to families where at least one grandparent finished high school. This association is net of teen mothers’ own socioeconomic status in the year prior to children's school entry. PMID:26806989
Full Text Available AIMS: To investigate whether education level of family members predicts all-cause and cardiovascular death and initial-episode peritonitis in patients on peritoneal dialysis (PD. METHODS: A total of 2264 patients on chronic PD were collected from seven centers affiliated with the Socioeconomic Status on the Outcome of Peritoneal Dialysis (SSOP Study. All demographic, socioeconomic and laboratory data of patients and the education level of all family members were recorded at baseline. Multivariate Cox regression was used to calculate the hazard ratio (HR of all-cause and cardiovascular mortality, and initial-episode peritonitis with adjustments for recognized traditional factors. RESULTS: There were no significant differences in baseline characteristics between patients with (n = 1752 and without (n = 512 complete education information. According to the highest education level of patients' family, included 1752 patients were divided into four groups, i.e. elementary or lower (15%, middle (27%, high (24% and more than high school (34%. The family highest education (using elementary school or lower group as reference, hazard ratio and 95% confidence interval of middle school group, high school group and more than high school group was 0.68[0.48-0.96], 0.64[0.45-0.91], 0.66[0.48-0.91], respectively rather than their average education level or patients' or spouse's education was significantly associated with the higher mortality. Neither patients' nor family education level did correlate to the risk for cardiovascular death or initial-episode peritonitis. CONCLUSIONS: Family members' education level was found to be a novel predictor of PD outcome. Family, as the main source of health care providers, should be paid more attention in our practice.
Andersen, S H; Lykke, E; Folker, M B
Whereas the generally accepted carcinogenesis pathway of the microsatellite instabile high (MSI-H) colorectal carcinoma (CRC) involves the traditional adenoma in patients with Lynch syndrome, a serrate pathway involving serrate adenomas (SA) and sessile serrate polyps (SSP) characterize...... the sporadic MSI-H counterpart. Recent studies have, however, challenged such simple one-pathway models, inviting the consideration of alternative, unexpected pathways. Here, the issue as to the possible role of SSP, primarily in the context of Lynch syndrome, but also in subjects from familial CRC families...... (FCF) is addressed. Polyps coded as hyperplastic polyps (HP) from subjects with Lynch syndrome and FCF enrolled in the HNPCC-register at the Hvidovre University Hospital as well as adenomas from this population were retrieved and reviewed for features of SSP. Ninety-eight polyps coded as HP and 41...
0.05) comparing to HC group. However, there were no statistically significant differences between the groups in terms of antioxidant vitamin levels. Conclusions: Our study demonstrated increased oxidative stress in patients with FMF during AP.
Conclusions: Among Japanese vitiligo patients, there is a subgroup with strong evidence of genetically determined susceptibility to not only vitiligo, but also to autoimmune thyroid disease and other autoimmune disorders.
Rajesh Kumar Singh
Conclusion: Training programs in communication skills should teach doctors how to elicit patients' preferences for information. Systematic training programs with feedback can decrease physicians stress and burnout. More research for understanding a culturally appropriate communication framework is needed.
Down Thomas A
Full Text Available Abstract Background Development of high-throughput methods for measuring DNA interactions of transcription factors together with computational advances in short motif inference algorithms is expanding our understanding of transcription factor binding site motifs. The consequential growth of sequence motif data sets makes it important to systematically group and categorise regulatory motifs. It has been shown that there are familial tendencies in DNA sequence motifs that are predictive of the family of factors that binds them. Further development of methods that detect and describe familial motif trends has the potential to help in measuring the similarity of novel computational motif predictions to previously known data and sensitively detecting regulatory motifs similar to previously known ones from novel sequence. Results We propose a probabilistic model for position weight matrix (PWM sequence motif families. The model, which we call the 'metamotif' describes recurring familial patterns in a set of motifs. The metamotif framework models variation within a family of sequence motifs. It allows for simultaneous estimation of a series of independent metamotifs from input position weight matrix (PWM motif data and does not assume that all input motif columns contribute to a familial pattern. We describe an algorithm for inferring metamotifs from weight matrix data. We then demonstrate the use of the model in two practical tasks: in the Bayesian NestedMICA model inference algorithm as a PWM prior to enhance motif inference sensitivity, and in a motif classification task where motifs are labelled according to their interacting DNA binding domain. Conclusions We show that metamotifs can be used as PWM priors in the NestedMICA motif inference algorithm to dramatically increase the sensitivity to infer motifs. Metamotifs were also successfully applied to a motif classification problem where sequence motif features were used to predict the family of
Beesley, Sarah J; Hopkins, Ramona O; Holt-Lunstad, Julianne; Wilson, Emily L; Butler, Jorie; Kuttler, Kathryn G; Orme, James; Brown, Samuel M; Hirshberg, Eliotte L
The ICU is a complex and stressful environment and is associated with significant psychologic morbidity for patients and their families. We sought to determine whether salivary cortisol, a physiologic measure of acute stress, was associated with subsequent psychologic distress among family members of ICU patients. This is a prospective, observational study of family members of adult ICU patients. Adult medical and surgical ICU in a tertiary care center. Family members of ICU patients. Participants provided five salivary cortisol samples over 24 hours at the time of the patient ICU admission. The primary measure of cortisol was the area under the curve from ground; the secondary measure was the cortisol awakening response. Outcomes were obtained during a 3-month follow-up telephone call. The primary outcome was anxiety, measured by the Hospital Anxiety and Depression Scale-Anxiety. Secondary outcomes included depression and posttraumatic stress disorder. Among 100 participants, 92 completed follow-up. Twenty-nine participants (32%) reported symptoms of anxiety at 3 months, 15 participants (16%) reported depression symptoms, and 14 participants (15%) reported posttraumatic stress symptoms. In our primary analysis, cortisol level as measured by area under the curve from ground was not significantly associated with anxiety (odds ratio, 0.94; p = 0.70). In our secondary analysis, however, cortisol awakening response was significantly associated with anxiety (odds ratio, 1.08; p = 0.02). Roughly one third of family members experience anxiety after an ICU admission for their loved one, and many family members also experience depression and posttraumatic stress. Cortisol awakening response is associated with anxiety in family members of ICU patients 3 months following the ICU admission. Physiologic measurements of stress among ICU family members may help identify individuals at particular risk of adverse psychologic outcomes.
Youngson, Megan J; Currey, Judy; Considine, Julie
To explore the characteristics of and interactions between clinicians, patients and family members during management of the deteriorating adult patient in the emergency department. Previous research into family presence during resuscitation has identified many positive outcomes when families are included. However, over the last three decades the epidemiology of acute clinical deterioration has changed, with a decrease in in-hospital cardiac arrests and an increase in acute clinical deterioration. Despite the decrease in cardiac arrests, research related to family presence continues to focus on care during resuscitation rather than care during acute deterioration. Descriptive exploratory study using nonparticipatory observation. Five clinical deterioration episodes were observed within a 50-bed, urban, Australian emergency department. Field notes were taken using a semistructured tool to allow for thematic analysis. Presence, roles and engagement describe the interactions between clinicians, family members and patients while family are present during a patient's episode of deterioration. Presence was classified as no presence, physical presence and therapeutic presence. Clinicians and family members moved through primary, secondary and tertiary roles during patients' deterioration episode. Engagement was observed to be superficial or deep. There was a complex interplay between presence, roles and engagement with each influencing which form the other could take. Current practices of managing family during episodes of acute deterioration are complex and multifaceted. There is fluid interplay between presence, roles and engagement during a patient's episode of deterioration. This study will contribute to best practice, provide a strong foundation for clinician education and present opportunities for future research. © 2017 John Wiley & Sons Ltd.
Rangachari, Pavani; Bhat, Anita; Seol, Yoon-Ho
Despite the growing momentum toward patient- and family-centered care at the federal policy level, the organizational literature remains divided on its effectiveness, especially in regard to its key dimension of involving patients and families in treatment decisions and safety practices. Although some have argued for the universal adoption of patient involvement, others have questioned both the effectiveness and feasibility of patient involvement. In this article, we apply a well-established theoretical perspective, that is, the Service Quality Model (SQM) (also known as the "customer service framework") to the health care context, to reconcile the debate related to patient involvement. The application helps support the case for universal adoption of patient involvement and also question the arguments against it. A key contribution of the SQM lies in highlighting a set of fundamental service quality determinants emanating from basic consumer service needs. It also provides a simple framework for understanding how gaps between consumer expectations and management perceptions of those expectations can affect the gap between "expected" and "perceived" service quality from a consumer's perspective. Simultaneously, the SQM also outlines "management requirements" for the successful implementation of a customer service strategy. Applying the SQM to the health care context therefore, in addition to reconciling the debate on patient involvement, helps identify specific steps health care managers could take to successfully implement patient- and family-centered care. Correspondingly, the application also provides insights into strategies for the successful implementation of policy recommendations related to patient- and family-centered care in health care organizations.
Mosher, Catherine E; Adams, Rebecca N; Helft, Paul R; O'Neil, Bert H; Shahda, Safi; Rattray, Nicholas A; Champion, Victoria L
Family caregivers of advanced colorectal cancer patients may be at increased risk for psychological distress. Yet their key challenges in coping with the patient's illness are not well understood. Soliciting both patient and caregiver perspectives on these challenges would broaden our understanding of the caregiving experience. Thus, the purpose of this research was to identify caregivers' key challenges in coping with their family member's advanced colorectal cancer from the perspective of patients and caregivers. Individual, semi-structured qualitative interviews were conducted with 23 advanced colorectal cancer patients and 23 primary family caregivers. Interview data were analyzed via thematic analysis. In nearly all cases, patient and caregiver reports of the caregiver's key challenge were discrepant. Across patient and caregiver reports, caregivers' key challenges included processing emotions surrounding the patient's initial diagnosis or recurrence and addressing the patient's practical and emotional needs. Other challenges included coping with continual uncertainty regarding the patient's potential functional decline and prognosis and observing the patient suffer from various physical symptoms. Findings suggest that eliciting the perspectives of both patients and caregivers regarding caregivers' challenges provides a more comprehensive understanding of their experience. Results also point to the need to assist caregivers with the emotional and practical aspects of caregiving.
Iriarte Cerdán, Laura; Ruiz de Galarreta, Leire Martínez; Olano Lizarraga, Maddi; García Vivar, Cristina
In the holistic care to the patient, the family should be an important part because its members are also affected by the situation. Therefore, nursing work should be directed to both the individual and his environment, being of great help to identify family's needs in order to meet their specific needs accurately. Also in the process of recovery the family goes through several stages of coping, each of them have its own characteristics and nurses' interventions should be adapted to them. The aim of this paper is to evidence the importance of caring for the family, identifying the stages of coping, recognizing their needs and identifying relevant care. For this, a clinical case of a family with a relative hospitalised in an intensive care unit because of an acute fulminant hepatitis was developed. The instruments used to carry out the analysis of the case are: family's needs described by Leske et al., coping stages identified by Kubler-Ross, and ways of coping scale developed by Lazarus and Folkman. Nurses have a relevant role due to their close contact with people, this helps to become a factor which facilitates the interaction of patient and family within the hospital environment. A holistic approach of nursing care involves assessing the needs of families to develop strategies for effective interventions.
Oxman, T E; Barrett, J
The relationships specified in DSM-III between somatization disorder and depression, and somatization disorder and hypochondriasis require further validation and easier methods of detection for use by primary care physicians. The authors investigated hypochondriacal and depressive symptoms in 13 family practice outpatients with somatization disorder. Pain complaints and depressive symptomatology were present in over 75% of this group, while hypochondriacal symptoms were present in 38%. The mean score on the somatization scale of the Hopkins Symptom Check List (HSCL-90) was greater than that reported for any other group. These findings support the separation of somatization disorder and hypochondriasis and suggest the need for better delineation of depressive subtypes in somatization disorder. The somatization scale of the HSCL-90 should be a useful screen for somatization disorder in future research.
Full Text Available OBJECTIVE: the objective was to understand the experience of a group of family members of patients with colostomies, revealing their expectations regarding the intervention of health professionals.METHOD: qualitative research, with the social phenomenological approach of Alfred Schütz, conducted in Montevideo in 2012; twelve family members of patients with colostomies participated, from an ostomy service of a health institution.RESULTS: the following categories were identified: family ties, trust in the health care team, the nurse as the articulator of the process, the desire to humanize care, and adaptation to new family life.CONCLUSIONS: knowing the experience and expectations of the families of colostomy patients was achieved, emphasizing the previous family relationships to build upon them, and the trust in the health team, emphasizing the nurse as articulator of the process. Expectations focused on the desire for humanized care, enhancing adaptation of the nuclear family to the new way of life, restoring and enhancing its strengths, and collaborating in overcoming its weaknesses.
Marsac, Meghan L; Kindler, Christine; Weiss, Danielle; Ragsdale, Lindsay
Communication is key in optimizing medical care when a child is approaching end of life (EOL). Research is yet to establish best practices for how medical teams can guide intrafamily communication (including surviving siblings) when EOL care is underway or anticipated for a pediatric patient. While recommendations regarding how medical teams can facilitate communication between the medical team and the family exist, various barriers may prevent the implementation of these recommendations. This review aims to provide a summary of research-to-date on family and medical provider perceptions of communication during pediatric EOL care. Systematic review. Findings from a review of 65 studies suggest that when a child enters EOL care, many parents try to protect their child and/or themselves by avoiding discussions about death. Despite current recommendations, medical teams often refrain from discussing EOL care with pediatric patients until death is imminent for a variety of reasons (e.g., family factors and discomfort with EOL conversations). Parents consistently report a need for honest complete information, delivered with sensitivity. Pediatric patients often report a preference to be informed of their prognosis, and siblings express a desire to be involved in EOL discussions. Families may benefit from enhanced communication around EOL planning, both within the family and between the family and medical team. Future research should investigate a potential role for medical teams in supporting intrafamily communication about EOL challenges and should examine how communication between medical teams and families can be facilitated as EOL approaches.
Full Text Available With the aim to advance our understanding regarding the role of the extended family interactional context for early mother-infant communication, we compared spontaneous early imitative exchanges in dyadic interactions between mothers and infants (Group 1, N = 26 who had no frequent contact with maternal grandmothers, to imitations in two familial subgroups (Group 2, N = 48: (a dyadic interactions of infants with their mothers, and (b with their grandmothers–persons who had frequent contact with the infant. Spontaneous dyadic interactions of infants with their mothers and grandmothers were video-recorded at home from the 2nd to the 10th month of their life. Both comparisons provided evidence of similar frequency of imitative exchanges and developmental trajectories of infant imitations, but also differences in the structure of imitation, the kinds of imitated behaviors and the temporal patterns of imitative components. In the frame of the theory of Innate Intersubjectivity, we assume that differential early family interaction may be related to variations in three fundamental dimensions of infant-significant other communication: “kinematics” (temporal patterns, “physiognomics” (spatial patterns or forms and “energetics” (force or effort. These variations may affect the child’s ability for regulation and negotiation of interpersonal challenges within and outside the family context.
Gonsorcikova, Lucie; Vaxillaire, Martine; Pruhova, Stepanka
We present a unique case of a 19-year-old man with a positive family history of persistent mild hyperglycemia and a novel V84I mutation in ABCC8. The proband was initially detected to have fasting hyperglycemia (ranging 6.1-6.4 mmol/L) at the age of 12 years. Increased fasting blood glucose was a...
Miller, Matthew J.; Lee, Richard M.
The factorial invariance of the Asian American Family Conflicts Scale-Likelihood (FCS-L) was examined in a sample of 1,012 participants. Results support the use of the FCS-L in future research with diverse Asian subgroups. Limitations and future directions for research are discussed. (Contains 7 tables and 1 note.)
Hung, Maria S Y; Pang, Samantha M C
This paper is a report of a study to illuminate the experience of family members whose relatives survived the resuscitation in an accident and emergency department, and their preferences with regard to being present. Family presence during resuscitation can offer benefits to both patient and family members, and large healthcare organizations support and recommend offering the option for their presence. However, many staff believe that this is too distressing or traumatic for families and that they would interfere with the resuscitation process. An interpretive phenomenological approach was used to collect data in 2007-2008 with 18 family members of patients who survived life-sustaining interventions in an accident and emergency department in Hong Kong. Audio-recorded interviews were transcribed verbatim for thematic analysis and verified with the participants in second interviews. None of the family members was present in resuscitation room during the life-sustaining interventions, and five entered the room after the patients' condition was stable. The majority indicated a strong preference to be present if given the option. Three interrelated themes emerged: (i) emotional connectedness, (ii) knowing the patient, and (iii) perceived (in)appropriateness, with 10 subthemes representing affective, rational and contextual determinants of family presence preferences. The interplay of these determinants and how they contributed to strong or weak preference for family presence was analysed. Variations among the contributing determinants to each family member's preference to be present were revealed. Appropriate nursing interventions, policy and guidelines should be developed to meet individualized needs during such critical and life-threatening moments in accident and emergency departments. © 2010 Blackwell Publishing Ltd.
Ottosen, Madelene J; Sedlock, Emily W; Aigbe, Aitebureme O; Bell, Sigall K; Gallagher, Thomas H; Thomas, Eric J
Patients and families report experiencing a multitude of harms from medical errors resulting in physical, emotional, and financial hardships. Little is known about the duration and nature of these harms and the type of support needed to promote patient and family healing after such events. We sought to describe the long-term impacts (LTIs) reported by patients and family members who experienced harmful medical events 5 or more years ago. We performed a content analysis on 32 interviews originally conducted with 72 patients or family members about their views of the factors contributing to their self-reported harmful event. Interviews selected occurred 5 or more years after the harmful event and were grouped by time since event, 5 to 9 years (22 interviews) or 10 or more years (10 interviews) for analysis. We analyzed these interviews targeting spontaneous references of ongoing impacts experienced by the participants. Participants collectively described the following four LTIs: psychological, social/behavioral, physical, and financial. Most cited psychological impacts with half-reporting ongoing anger and vivid memories. More than half reported ongoing physical impacts and one-third experienced ongoing financial impacts. Long-term social and behavioral impacts such as alterations in lifestyle, self-identity, and healthcare seeking behaviors were the most highly reported. These patients and families experienced many profound LTIs after their harmful medical event. For some, these impacts evolved into secondary harms ongoing 10 years and more after the event. Our results draw attention to the persistent impacts patients and families may experience long after harmful events and the need for future research to understand and support affected patients and families.
Ozcelik, Hanife; Cakmak, Deniz Ezgi; Fadiloglu, Cicek; Yildirim, Yasemin; Uslu, Ruchan
The objective of our study was to determine the satisfaction levels of family members of patients with advanced-stage cancer. This descriptive study was conducted in the palliative care and medical oncology clinics of a university hospital in the province of Izmir between April of 2011 and January of 2012. The study sample consisted of a total of 145 family members, who were selected from among the family members of patients with advanced-stage cancer receiving palliative treatment. The study data were obtained using the Patient Description Form and Family Satisfaction Scale during face-to-face interviews with patients. Some 67% of patients were female and 33% male, 70% were married, 35% were high school graduates, and 34.5% were housewives. The average total family satisfaction score was 76.87 ± 1.14, and the average scores for the component variables were as follows: information giving 74.37 ± 1.28, availability of care 78.40 ± 1.17, physical care 78.99 ± 1.09, and psychosocial care 74.52 ± 1.30. We found a relationship between the level of satisfaction of family members and (1) gender, (2) occupation, (3) presence of someone supporting the care, and (4) possession of sufficient information about the patient (p Satisfaction levels of participants were determined to be high. We found that family member satisfaction levels were affected by gender and occupation, the existence of someone supporting the care, and possession of sufficient information about the patient.
Eden, Elizabeth L; Rack, Laurie L; Chen, Ling-Wan; Bump, Gregory M
Rapid response teams (RRTs) help in delivering safe, timely care. Typically they are activated by clinicians using specific parameters. Allowing patients and families to activate RRTs is a novel intervention. The University of Pittsburgh Medical Center developed and implemented a patient- and family-initiated rapid response system called Condition Help (CH). When the CH system is activated, a patient care liaison or an on-duty administrator meets bedside with the unit charge nurse to address the patient's concerns. In this study, we collected demographic data, call reasons, call designations (safety or nonsafety), and outcome information for all CH calls made during the period January 2012 through June 2015. Two hundred forty patients/family members made 367 CH calls during the study period. Most calls were made by patients (76.8%) rather than family members (21.8%). Of the 240 patients, 43 (18%) made multiple calls; their calls accounted for 46.3% of all calls (170/367). Inadequate pain control was the reason for the call in most cases (48.2%), followed by dissatisfaction with staff (12.5%). The majority of calls involved nonsafety issues (83.4%) rather than safety issues (11.4%). In 41.4% of cases, a change in care was made. Patient- and family-initiated RRTs are designed to engage patients and families in providing safer care. In the CH system, safety issues are identified, but the majority of calls involve nonsafety issues. Journal of Hospital Medicine 2017;12:157-161. © 2017 Society of Hospital Medicine
Korkmaz, Gülçin; Küçük, Leyla
This descriptive study aims to identify the relationship between internalized stigma and perceived family support in patients hospitalized in an acute psychiatric unit. The sample is composed of 224 patients treated in an acute inpatient psychiatric ward in İstanbul, Turkey. The data were collected using information obtained from the Internalized Stigma of Mental Illness Scale and Social Support from Family Scale. The mean age of the patients was 37±11.56years, and the mean duration of treatment was 6.27±5.81years. Most patients had been hospitalized three or more times. Of the total number of patients, 66.1% had been taken to the hospital by family members. We noted a statistically significant negative correlation between the total scores obtained from the perceived Social Support from Family Scale and the Internalized Stigma of Mental Illness Scale. The patients were observed to stigmatize themselves more when the perceived social support from their family had decreased. Copyright © 2015 Elsevier Inc. All rights reserved.
Holland, Jennifer E; DeMaso, David R; Rosoklija, Ilina; Johnson, Kathryn L; Manning, Diane; Bellows, Alexandra L; Bauer, Stuart B
This pilot study evaluated the safety, feasibility, and usefulness of the Self-Cathing Experience Journal (SC-EJ), an online resource for patients and families to address issues and stigma surrounding clean intermittent catheterization (CIC). Modeled after previous assessments of the Cardiac and Depression Experience Journals (EJs), this project uniquely included patients and caregivers. We explored whether patients and caregivers would find the SC-EJ helpful in increasing their understanding of CIC, accepting the medical benefits of self-catheterization, improving hopefulness, and diminishing social isolation. Patients seen in a tertiary urology clinic were asked to view the SC-EJ for 30 min and rate its safety and efficacy. The cross-sectional sample included 25 families: 17 surveys were completed by the patient and their caregiver, five by the patient only, and three by the caregiver only. Mean patient age was 15.7 ± 5.8 years (range 7-29 years). The patients were 64% female, and 72% used CIC due to neurological diagnoses. Mean overall patient satisfaction with the SC-EJ was moderately high (mean = 5, out of a 7-point Likert scale from 1 = not at all to 7 = extremely). Mean overall caregiver satisfaction was high (mean = 5.55) and was similar to caregiver satisfaction scores recorded in caregivers with children with congenital heart disease and depression (mean = 5.7 and mean = 5.75, respectively). No significant differences were noted in satisfaction between CIC patients and CIC caregivers or among caregivers of the three populations surveyed (CIC, Cardiac, and Depression). CIC patients and caregivers reported that SC-EJ viewing gave them a strong sense that others are facing similar issues (patient mean = 6.15, caregiver mean = 6.21) and that it was helpful to read about other families' CIC experiences (patient mean = 6, caregiver mean = 5.89). The SC-EJ appears to be safe, feasible, and useful to patients and families using CIC. Ratings from caregivers of
Kenter, E G; Okkes, I M
To gain insight into the prevalence and treatment of severe fatigue in general practice. Secondary data analysis. By means of an episode-oriented morbidity registration by 54 GPs throughout the Netherlands over the period 1985-1994 it was established how often in the course of one year 'fatigue' was listed as the reason for consultation, what diagnoses were then made, how long episodes of care because of 'fatigue' lasted and what interventions took place (n = 93,297). Of the patients with a care episode because of 'fatigue' lasting at least 6 months, age, sex, comorbidity and consumption of care were established; for this purpose use was also made of a file containing data on 4 years in succession (n = 9630). Per annum, 92 per 1000 listed patients consulted the GP because of fatigue. Somatic or psychic diagnoses were made in 27.7 per 1000 patients listed. The episode of care lasted 4 weeks at most in 86% and at least 6 months in approximately 4%. The GPs' management of patients with 'fatigue' included physical examination in 63% and blood testing in 34%, conversation in 35%, prescription of medication in 24% and referral to a specialist in 3%. Of the 97 patients with fatigue lasting longer than 6 months, 61% had a chronic disease or psychic problems. Fatigue is frequently encountered in general practice, but the estimate that one per 1000 listed patients meets the criteria of the chronic fatigue syndrome looks a little high. It appears that GPs, in accordance with recommendations, mostly adopt a policy of wait and see.
Kontio, Raija; Lantta, Tella; Anttila, Minna; Kauppi, Kaisa; Välimäki, Maritta
This study aimed to explore relatives' perceptions of violent episodes and their suggestions on managing violence. Qualitative design with focus groups including relatives (n = 8) was carried out. Data were analyzed using inductive content analysis. The relatives described patient violence in different contexts: at home, in a psychiatric hospital, and after discharge from the psychiatric hospital. They suggested interventions to achieve safer and more humane management of violent episodes. Relatives are a valuable source of information in developing strategies to manage patient violence humanely. Their views on developing the quality of psychiatric care merit more attention. © 2015 Wiley Periodicals, Inc.
Nemati, Shahnaz; Rassouli, Maryam; Ilkhani, Mahnaz; Baghestani, Ahmad Reza
The experience of caring for a family member with cancer is associated with several care-related problems and challenges for the caregiver. The comprehensive and in-depth understanding of the trials and tribulations of caregiving can be a step towards resolving the problems faced by family caregivers of these patients. The present study aimed to explore challenges faced by Iranian family caregivers of cancer patients. The present qualitative study was conducted through in-depth semi-structured interviews held with 21 family caregivers of cancer patients selected through purposive sampling. Interviews continued until saturation of data. All interviews were recorded, transcribed and analysed through conventional content analysis. The codes extracted from interviews produced four main themes, including 'confusion', 'uncertainty', 'disintegration' and 'setback', which collectively caused suffering for family caregivers. Care provided in an atmosphere of suffering and discontent diminishes caregiver's quality of life and quality of patient care. Health planners should therefore consider the challenges and sufferings faced by family caregivers and should seek to obviate them through appropriate plans. © 2017 Nordic College of Caring Science.
Heitman, Linda; McClard, Catherine
Critical care nurses identified that, although a liberal visitation policy was followed, patients and families occasionally expressed preferences for verbal communication, rather than have the visitor physically present in the unit. Previously tested communication devices interfered with operating equipment resulting in poor reception. The purpose of this project was to find an effective method for patients to verbally communicate with visitors.
Marcinowicz, Ludmila; Chlabicz, Slawomir; Grebowski, Ryszard
Patient satisfaction is a complex and difficult concept to measure, thus precluding the use of exclusively quantitative methods for its description. The purpose of this survey was firstly to identify particular healthcare dimensions that determine a patient's satisfaction or dissatisfaction; and secondly to attempt to typologise the patients' responses based on their evaluation of healthcare. Using a qualitative research design, thirty-six in-depth interviews with patients of family physicians were conducted: four patients from each of 9 family practices in different regions of Poland were interviewed. The main outcome measure was factors associated with patient satisfaction/dissatisfaction. In their evaluations of their contacts with family doctors, the patients cited mostly issues concerning interpersonal relationships with the doctor. Nearly 40% of the statements referred to this aspect of healthcare, with nearly equal proportions of positive and negative comments. The second most frequent category of responses concerned contextual factors (21%) that related to conditions of medical service, with two-thirds of the evaluations being negative. Statements concerning the doctor's competencies (12.9%) and personal qualities (10.5%) were less common. To improve the quality of healthcare, family doctors should take special care to ensure the quality of their interactions with patients.
AR Yong Rafidah
Full Text Available Doctor-patient communication skills are important in family medicine and can be taught and learned. This paper summarisesthe salient contents and main methods of the teaching and learning of doctor-patient communication, especially thoseapplicable to the discipline.
Schermer, T.R.J.; Leenders, J.L.H.; Veen, H. in 't; Bosch, W.J.H.M. van den; Wissink, A.; Smeele, I.J.M.; Chavannes, N.H.
PURPOSE: To establish situations in which family physicians (FPs) consider pulse oximetry a valuable addition to their clinical patient assessment; to explore pulse oximetry results (SpO(2)) when used by FPs in patients with chronic obstructive pulmonary disease (COPD); to explore associations
Jensen, J M; Gerdes, Lars Ulrik; Jensen, H K
OBJECTIVES: Existing algorithms of risk of coronary heart disease (CHD) do not pertain to patients with familial hypercholesterolaemia (FH), whose arteries have been exposed to hypercholesterolaemia since birth. We studied a cohort of FH patients to compare four diagnostic models of CHD: traditio...
Rossberg, Jan Ivar; Johannessen, J O; Klungsoyr, O
OBJECTIVE: To compare outcome over 5 years for patients who participated in multi family groups (MFGs) to those who refused or were not offered participation. METHOD: Of 301 first episode psychotic patients aged 15-65 years, 147 participated in MFGs. Outcome was measured by drop-out rates, positive...
Mola, Ernesto; De Bonis, Judith A; Giancane, Raffaele
Efforts to improve the quality of healthcare for patients with chronic conditions have resulted in growing evidence supporting the inclusion of patient empowerment as a key ingredient of care. In 2002, WONCA Europe issued the European Definition of General Practice/Family Medicine, which is currently considered the point of reference for European health institutions and general medical practice. Patient empowerment does not appear among the 11 characteristics of the discipline. The aim of this study is to show that many characteristics of general practice are already oriented towards patient empowerment. Therefore, promoting patient empowerment and self-management should be included as a characteristic of the discipline. The following investigation was conducted: analysing the concept and approach to empowerment as applied to healthcare in the literature; examining whether aspects of empowerment are already part of general medical practice; and identifying reasons why the European definition of general practice/family medicine should contain empowerment as a characteristic of the discipline. General practice/family medicine is the most suitable setting for promoting patient empowerment, because many of its characteristics are already oriented towards encouraging it and because its widespread presence can ensure the generalization of empowerment promotion and self-management education to the totality of patients and communities. "Promoting patient empowerment and self-management" should be considered one of the essential characteristics of general practice/family medicine and should be included in its definition.
Zanini, S; Ajmone, C; Margola, D; Busnach, G; Summa, I; Brunati, C; Cabibbe, M; Dal Col, A; De Ferrari, M E; Macaluso, M
According to health psychology, the family caregiver (fc), i.e. the person who takes care of a hemodialysed patient, plays a pivotal role in coping with dialysis. This study explored and compared the lifestyle and the main needs of a cohort of hemodialysis patients, with reduced personal autonomy, to their fc, evaluating some psychological functional parameters, such as the perception of familial and social support, the psychological quality of life, the disability due to chronic illness, and the communication style. An anonymous multiple versions questionnaire, administered according to the caregiver's family relationship, was given for self assessment to 54 couples of patients and related fc (spouse, son/daughter and brother/sister), mean age 66 and 60, respectively; mean dialytic patients' age: 8 years and 6 months. The questionnaire consisted of three different sections, demographics, renal disease and psychological evaluation, with 4 standard scales (Social Support Satisfaction, Marital Communication, Psychological General Well-Being Index and Evaluation of Needs). A multivariate variance analysis (MANOVA) was subsequently performed. Women have a higher perception of their lifestyle change after dialysis, and, in general, patients communicate more easily with their fc than vice versa. Communication problems are more common in patients with a recent diagnosis. Patients and fc mostly need a better dialogue with their nephrologists and urge some psychological help. The quality of the relationship between physicians, patients and their families is a key element in the process of healing.
Hwang, Boyoung; Luttik, Marie Louise; Dracup, Kathleen; Jaarsma, Tiny
Background: Knowledge about the potential burden for family caregivers related to the care of patients with heart failure (HF) is limited. The aims of the study were to compare the kind and amount of care provided by partners of HF patients and partners of healthy individuals and to examine the
Bouca-Machado, R.; Titova, N.; Chaudhuri, K.R.; Bloem, B.R.; Ferreira, J.J.
Parkinson's disease is the second most common neurodegenerative disease worldwide. There is widespread consensus that Parkinson patients, their carers, and clinicians involved in their care would benefit from a fully integrated, need-based provision of palliative care. However, the concept of
Ronis, Sarah D; Baldwin, Constance D; Blumkin, Aaron; Kuhlthau, Karen; Szilagyi, Peter G
Attention-deficit hyperactivity disorder (ADHD) can impair child health and functioning, but its effects on the family's economic burden are not well understood. The authors assessed this burden in US families of children with ADHD, and the degree to which access to a patient-centered medical home (PCMH) might reduce this burden. We conducted cross-sectional analyses of 2005-2006 and 2009-2010 National Surveys of Children with Special Health Care Needs, focusing on families of children with ADHD. They defined family economic burden as (1) family financial problems (annual expenses for the child's health care or illness-related financial problems for the family) and/or (2) family employment problems (job loss, work time loss, or failure to change jobs to avoid insurance loss). Relative risk models assessed associations between PCMH and family economic burden, adjusted for child age, sex, ethnicity, ADHD severity, poverty status, caregiver education, and insurance. In 2009, 26% of families reported financial problems because of the child's ADHD, 2.1% reported out-of-pocket expenses >5% of income, and 36% reported employment problems. Only 38% reported care that met all 5 criteria for a PCMH (similar to rates in 2005-2006). In multivariable analysis, care in a PCMH was associated with 48% lower relative risk (RR) of financial problems (RR = 0.52, p family-centered care and care coordination were more strongly associated with lower burden. The economic burdens of families with ADHD are significant but may be alleviated by family-centered care and care coordination in a medical home.
To look at patients' views about the way in which they are recruited to assist with postgraduate medical training (i.e. Who is the best person to ask patients to participate? When is the best time for patients to be asked?) and to compare these with clinical practice. Questionnaire surveys of 103 female family planning clinic (FPC) patients and 40 Diploma of the Faculty of Family Planning (DFFP) instructing doctors. Patients were recruited from the waiting room of a community FPC, and DFFP instructing doctors from the North West of England were recruited at an updating meeting. Patients preferred to be recruited by non-medical staff (i.e. receptionist and nurses). Few patients wanted to be asked by the training doctor. Only 9% would find it difficult to refuse a receptionist, 47% would find it difficult to refuse the instructing doctor and 65% would find it difficult to refuse the training doctor. In practice, the commonest person to recruit patients is the instructing doctor. Patients wanted to be given some time to consider the request; this was not always given. Patients may feel coerced into seeing training doctors because they find it difficult to refuse requests, particularly when they are being recruited by doctors. Non-medical staff may be more appropriate for the initial recruitment of patients. Patients need time to consider their involvement. The provision of written information may be useful. Further research is indicated to empower patients' decision-making and reduce the likelihood of coercion.
Yennurajalingam, Sriram; Noguera, Antonio; Parsons, Henrique Afonseca; Torres-Vigil, Isabel; Duarte, Eva Rosina; Palma, Alejandra; Bunge, Sofia; Palmer, J. Lynn; Delgado-Guay, Marvin Omar; Bruera, Eduardo
Background Understanding family caregivers’ decisional role preferences is important for communication, quality of care, and patient and family satisfaction. The family caregiver has an important role in a patient’s decisional role preferences. There are limited studies on family caregivers’ preferences of the patient’s decisional control at the end of life among Hispanics. Aims To identify Hispanic caregivers’ preferences of the decision control of patients with advanced cancer and to compare the preferences of caregivers in Latin America (HLA) and Hispanic American (HUSA) caregivers. Design We surveyed patients and their family caregivers referred to outpatient palliative care clinics in the United States, Chile, Argentina, and Guatemala. Caregiver preferences of patient’s decisional control were evaluated using the Control Preference Scale. Caregivers’ and patients’ socio-demographic variables, patient performance status, and HUSA patient acculturation level was also collected. Participants A total of 387 caregivers were surveyed: 100 (26%) in Chile, 99 (26%) in Argentina, 97 (25%) in Guatemala, and 91 (24%) in the United States. The median age was 56 years, and 59% were female. Results Caregiver preference of patients decisions control was passive, shared, and active by 10 (11%), 45 (52%) and 32 (37%) HUSA caregivers and 54 (19%), 178 (62%) and 55 (19%) HLA caregivers (p=0.0023). Caregiver acculturation level did not affect the preferences of the HUSA sample (p=0.60). Conclusions Most Hispanic family caregivers preferred the patient to make shared decisions. HLA caregivers preferred more frequently patients to assume a passive decisional role. Acculturation did not influence the preferences of HUSA caregivers. PMID:23670718
Daniel Ferreira Dahdah
Full Text Available There is a consensus in the literature that the company of a family member during the hospitalization period increases patient recovery. However, this can have some negative effects on the caregiver’s health. With the purpose of reducing these negatives effects, it is useful to let family members express themselves. The State Hospital of Ribeirão Preto created a Group of Family Companions coordinated by the Occupational Therapy and Social Service. This study focuses on the assistance offered in a general hospital to families that undergo the whole illness and hospitalization process of their family member, suffering the impacts of this process in their daily lives, and on the intervention of Occupational Therapy in these cases.
Pullwitt, D H; Krause, O; Hildebrand, F; Fischer, G C
Family doctors play an important role in promoting the access of patients to rehabilitation. On the one hand they are very often the first professionals to be contacted if patients want to take part in rehabilitation procedures whereas on the other hand there are also many patients whose need for rehabilitation remains undisclosed. No detailed estimates are available on how many of such patients exist in German GP-practices although it should be an important task of family doctors to discuss the pros and cons of rehabilitation particularly with their patients who are in need of it. We performed a non-representative pilot study in three GP offices during ten working days. patients older than 29 years were screened for their "rehabilitation status" with an instrument frequently used in German rehabilitation clinics. The patients were also asked whether or not they would like to participate in a rehabilitation procedure and what was the reason for their decision. Not knowing the patients' answers their doctors rated whether or not it would be appropriate for their patients to take part in rehabilitation. Additionally the doctors stated what kind of rehabilitation should be performed and what could be ist aims. In a sample of 181 patients about one-third was found to be in a severe "rehabilitation status", about one third in a state with higher than normal values--although not severe--and also approx. another third had a normal status. Family doctors stated that for one-third of their patients rehabilitation would be undoubtedly suitable at the time of the screening. In about two thirds of the cases the results of the questionnaire and the doctors' ratings corresponded. Some patients felt completely healthy although the results of the questionnaire and the doctors' statements rated them as being in need of rehabilitation. Other patients in need of rehabilitation rejected it for other than health-related reasons. The results of our study give evidence to the family
Alex Magno Coelho Horimoto
Full Text Available ABSTRACT Introduction: Systemic sclerosis (SSc is a connective tissue disease of unknown etiology, characterized by a triad of vascular injury, autoimmunity and tissue fibrosis. It is known that a positive family history is the greatest risk factor already identified for the development of SSc in a given individual. Preliminary observation of a high prevalence of polyautoimmunity and of familial autoimmunity in SSc patients support the idea that different autoimmune phenotypes may share common susceptibility variants. Objectives: To describe the frequency of familial autoimmunity and polyautoimmunity in 60 SSc patients in the Midwest region of Brazil, as well as to report the main autoimmune diseases observed in this association of comorbidities. Methods: A cross-sectional study with recruitment of 60 consecutive patients selected at the Rheumatology Department, University Hospital, Medicine School, Federal University of Mato Grosso do Sul (FMUFMS, as well as interviews of their relatives during the period from February 2013 to March 2014. Results: A frequency of 43.3% of polyautoimmunity and of 51.7% of familial autoimmunity in SSc patients was found. Patients with the presence of polyautoimmunity and familial autoimmunity presented primarily the diffuse form of SSc, but this indicator did not reach statistical significance. The autoimmune diseases most frequently observed in polyautoimmunity patients were: Hashimoto's thyroiditis (53.8%, Sjögren's syndrome (38.5%, and inflammatory myopathy (11.5%. The main autoimmune diseases observed in SSc patients' relatives were: Hashimoto's thyroiditis (32.3%, rheumatoid arthritis (22.6%, and SLE (22.6%. The presence of more than one autoimmune disease in SSc patients did not correlate with disease severity or activity. Conclusions: From the high prevalence of coexisting autoimmune diseases found in SSc patients, we stress the importance of the concept of shared autoimmunity, in order to promote a
Full Text Available The article concerns of the psychopathology of drug addiction, with an emphasis on the phenomenology of borderline personality disorder. The attention is focused on setting up of family ties in subjects with substance abuse disorders. In particular the anthropological frame of trauma is studied which presents itself as the core on which the therapeutic work is based. Keywords:Addiction; Borderline personality disorder; Trauma
Dziadzko, Volha; Dziadzko, Mikhail A; Johnson, Margaret M; Gajic, Ognjen; Karnatovskaia, Lioudmila V
Post-intensive care syndrome (PICS), which encompasses profound psychological morbidity, affects many survivors of critical illness. We hypothesize that acute psychological stress during the intensive care unit (ICU) confinement likely contributes to PICS. In order to develop strategies that mitigate PICS associated psychological morbidity, it is paramount to first characterize acute ICU psychological stress and begin to understand its causative and protective factors. A structured interview study was administered to adult critical illness survivors who received ≥48h of mechanical ventilation in medical and surgical ICUs of a tertiary care center, and their families. Fifty patients and 44 family members were interviewed following ICU discharge. Patients reported a high level of psychological distress. The families' perception of patient's stress level correlated with the patient's self-estimated stress level both in daily life (rho=0.59; ptherapy/walking (14%) were perceived to be important mitigating factors. Clinicians' actions that were perceived to be very constructive included reassurance (54%), explanations (32%) and physical touch (8%). Fear, hallucinations, and the inability to communicate, are identified as central contributors to psychological stress during an ICU stay; the presence of family, and physician's attention are categorized as important mitigating factors. Patients and families identified several practical recommendations which may help assuage the psychological burden of the ICU stay. Copyright © 2017 Elsevier Inc. All rights reserved.
Lim, Haikel A; Tan, Joyce Ys; Chua, Joanne; Yoong, Russell Kl; Lim, Siew Eng; Kua, Ee Heok; Mahendran, Rathi
Family caregivers of cancer patients often suffer from impaired quality of life (QOL) due to stress arising from the responsibility of caregiving. Most research on such QOL impairments was conducted in Western populations. Thus, this exploratory study sought to (a) examine the QOL levels of family caregivers of cancer patients in an Asian population in Singapore, in relation to caregivers from other countries within and outside of Asia; and (b) investigate the association between sociodemographic factors and QOL impairments in family caregivers in Singapore. A total of 258 family caregivers of cancer patients who were receiving outpatient treatment completed the Caregiver Quality of Life Index-Cancer (CQOLC) and a sociodemographic survey. We compared the published CQOLC total scores from Turkey, Iran, Taiwan, South Korea, the United Kingdom, the United States and Canada with the Singapore dataset and examined the demographic relationships. Caregivers in Singapore and Asia had lower CQOLC total scores than their Western counterparts. Caregivers who were male, of Chinese ethnicity, had parental relationships with their care recipient, or cared for advanced-stage cancer patients were found to have impaired QOL. The findings of this study highlight possible areas in which support can be provided for family caregivers of cancer patients, and underscore the need to reconcile cultural diversity, values, societal expectations and demographic characteristics in Singapore. Copyright: © Singapore Medical Association
Kock, M; Berntsson, C; Bengtsson, A
A practice with a follow-up meeting post death (FUMPD) with physician and staff for family members of patients who died in the intensive care unit (ICU) was started as a quality project to improve the support of families in post-ICU bereavement. A quality improvement control was conducted after 4 years. The quality improvement control was made retrospectively as an anonymous non-coded questionnaire. Part A related to the FUMPD. Part B inquired if we could contact the family member again for a research project to evaluate family support post-ICU bereavement. The questionnaires were sent to 84 family members of 56 deceased patients. Part A: 46 out of 84 family members answered and had attended a FUMPD. Ninety-one percent of the family members thought that we should continue to offer FUMPD. Seventy-eight percent were satisfied with their meeting. Eighty percent felt that they understood the cause of death. The majority wanted the meeting to take place within 6 weeks of death. Ninety-one percent rated the physician as important to be present at the meeting. The social worker was rated more important to attend the meeting than the assistant nurse. Ninety-one percent wanted to discuss the cause of death.Part B: 54 out of 84 family members answered. Twenty out of 54 did not want us to contact them again. A routine with a Follow-Up Meeting Post Death with the ICU team for the families of the patients who die in the ICU is appreciated. The presence of the physician is important. © 2014 The Acta Anaesthesiologica Scandinavica Foundation. Published by John Wiley & Sons Ltd.
Gramer, Gwendolyn; Gramer, Eugen; Weisschuh, Nicole
Prospective evaluation of family history (FH) of glaucoma and FH of optic disc drusen (ODD) in patients with sonographically confirmed ODD. A total of 87 patients with ODD interviewed all their first-degree and second-degree relatives using a detailed questionnaire on whether an ophthalmologist had diagnosed or excluded glaucoma or ocular hypertension (OH). Using a second questionnaire, 62 of these patients also provided information about ODD in their FH. Control groups for FH of glaucoma consisted of 2170 patients with glaucoma or OH evaluated with the same methods and identical questions for FH of glaucoma in a previous study, and of 176 healthy individuals without glaucoma or ODD who were interviewed on family history of glaucoma. Glaucoma in FH was significantly more frequent in patients with ODD with an incidence of 20.7% compared with healthy controls with an incidence of 2.8%, and half as frequent as in glaucoma patients with an incidence of 40%. ODD in FH were found in 9.7% of patients with ODD. As there is a high frequency of family history of glaucoma in patients with ODD, evaluation of FH of ODD and FH of glaucoma is essential in patients with ODD. Glaucoma in FH of ODD patients requires intraocular pressure monitoring and whenever deemed beneficial timely initiation of intraocular pressure-lowering therapy.
Dannon, Pinhas N; Lowengrub, Katherine M; Iancu, Iulian; Kotler, Moshe
Kleptomania, defined by DSM-IV as the inability to resist the impulse to steal objects which are not needed for personal use or for their monetary value, may reflect a form of obsessive-compulsive spectrum disorder and/or affective spectrum disorder. Twenty-one kleptomanic patients and 57 first-degree relatives completed a semistructured DSM-IV-based interview and questionnaires. Questionnaires are: the HDRS-17 (the Hamilton Rating Scale for Depression), the HARS (Hamilton Rating Scale for Anxiety), the Y-BOCS (Yale-Brown Obsessive Compulsive Scale), the YMRS (Young Mania Rating Scale). The two groups were compared to demographically matched normal controls (n = 64). We found a high prevalence of affective and anxiety disorders in our sample of kleptomanic patients and their first-degree relatives. In addition, the scores on the HDRS, HARS, and Y-BOCS were significantly higher in the study group than in the control group. Our finding of a high prevalence of psychiatric comorbidity in kleptomanic patients could lead to the development of new treatment strategies for this disorder. Furthermore, the pattern of psychiatric disorders seen in the first-degree relatives can lead to new insights about the nosology and etiopathology of kleptomania. Copyright 2004 S. Karger AG, Basel
Hagedoorn, E I; Paans, W; Jaarsma, T; Keers, J C; van der Schans, C; Luttik, M Louise
Caregiving by family members of elderly with chronic conditions is currently intensifying in the context of an aging population and health care reform in the Netherlands. It is essential that nurses have attention for supporting roles of family caregivers of older patients and address family caregiving aspects on behalf of the continuity of care. This study aims to explore what aspects of family caregiving were addressed during planned discussions between nurses, patients and family caregivers in the hospital. Qualitative descriptive research was conducted using non-participant observation and audio-recordings of planned discussions between nurses, older patients and their family caregivers as they took place in the hospital. Through purposive sampling eligible patients (≥ 65 years) with one or more chronic conditions were included. These patients were admitted to the hospital for diagnostics or due to consequences of their chronic illness. Retrospective chart review was done to obtain patient characteristics. Data were collected in November/December 2013 and April/May 2014 in four hospitals. Qualitative content analysis was performed using the inductive approach in order to gain insight into addressed aspects of family caregiving. A total of 62 patients (mean age (SD) 76 years (7.2), 52% male) were included in the study, resulting in 146 planned discussions (62 admission and discharge discussions and 22 family meetings). Three themes were identified regarding addressed aspects of family caregiving. Two themes referred to aspects addressing the patients' social network, and included 'social network structure' and 'social network support'. One theme referred to aspects addressing coordination of care issues involving family caregiving, referred to as 'coordination of care'. During discussions nurses mostly addressed practical information on the patients' social network structure. When specific family caregiving support was addressed, information was limited and
Bisgaard, M L; Ripa, R; Knudsen, Anne Louise
BACKGROUND: Development of more than 100 colorectal adenomas is diagnostic of the dominantly inherited autosomal disease familial adenomatous polyposis (FAP). Germline mutations can be identified in the adenomatous polyposis coli (APC) gene in approximately 80% of patients. The APC protein...... comprises several regions and domains for interaction with other proteins, and specific clinical manifestations are associated with the mutation assignment to one of these regions or domains. AIMS: The phenotype in patients without an identified causative APC mutation was compared with the phenotype...... in patients with a known APC mutation and with the phenotypes characteristic of patients with mutations in specific APC regions and domains. PATIENTS: Data on 121 FAP probands and 149 call up patients from 70 different families were extracted from the Danish Polyposis register. METHODS: Differences in 16...
Lee, Kae Meng Thomas; Manning, Victoria; Teoh, Hui Chin; Winslow, Munidasa; Lee, Arthur; Subramaniam, Mythily; Guo, Song; Wong, Kim Eng
INTRODUCTIONS AND AIMS: Research from western countries indicates that family members of addiction patients report heightened stress and psychological morbidity. This current study aimed to examine stress, coping behaviours, related morbidity and subsequent resource utilisation among family members of patients attending a national treatment program in Singapore. The study used a matched case-control design. One hundred family members of addiction patients attending treatment and 100 matched controls completed a semi-structured interview with a researcher. This included the Beck Depression Inventory-II, Short-Form Health Survey-36, General Health Questionnaire-28, Perceived Stress Scale, Family Member Impact Scale and Coping Questionnaire, and also assessed service utilisation. T-tests revealed significantly greater depression, stress and psychiatric morbidity and poorer overall well-being (Short-Form Health Survey-36) among family members compared with controls. Despite the apparent negative impact on mental health, their physical morbidity did not differ from controls and services utilisation was low. Tolerant-inactive coping was found to be most strongly correlated with psychological well-being. Multivariate analysis indicated that perceived stress was the strongest predictor of overall strain (General Health Questionnaire), but this was not moderated by coping style. Subjective appraisal of stress and coping responses are essential factors affecting the morbidity of family members. Family members demonstrated a need and willingness to engage in formal treatment/counselling for their own problems that were attributed to living with an addiction patient. This provides an opportunity for stress management and brief interventions to modify coping styles, thereby minimizing the potential negative mental health impact on family members. © 2011 Australasian Professional Society on Alcohol and other Drugs.
Dannon, Pinhas N; Lowengrub, Katherine; Aizer, Anat; Kotler, Moshe
Pathological gambling is a highly prevalent and disabling impulse control disorder. Recent studies have consistently demonstrated that pathological gamblers respond well to treatment with selective serotonin reuptake inhibitors, mood stabilizers and opioid antagonists. These findings have supported the observation that pathological gambling is associated with anxiety and mood spectrum disorders as well as addictive disorders. Fifty-two male pathological gamblers and their first-degree relatives (n=93) completed a semi-structured DSM-IV-based diagnostic interview as well as a series of data collection instruments including the South Oaks Gambling Scale, the Hamilton Rating Scale for Depression, the Hamilton Rating Scale for Anxiety, the Yale-Brown Obsessive-Compulsive Scale, and the Young Mania Rating Scale. The study subjects and their first-degree relative were compared to demographically matched normal controls (n=96). We found higher prevalence of alcohol, substance abuse, problematic gambling, depression, and anxiety disorders in the pathological gamblers and their first-degree relatives than in the control group. In particular, the scores on the Hamilton Rating Scale for Depression, the Hamilton Rating Scale for Anxiety, and the Yale-Brown Obsessive-Compulsive Scale were higher in the study group than in the control group. Our finding of a high prevalence of psychiatric comorbidity in pathological gamblers and their families raises the question of the proper classification of pathological gambling in the DSM-IV. Furthermore, the pattern of psychiatric disorders seen in the first-degree relatives can lead to new insights about the etiopathology of pathological gambling.
Slatyer, Susan; Pienaar, Catherine; Williams, Anne M; Proctor, Karen; Hewitt, Laura
To explore the experiences and perceptions of hospital staff caring for dying patients in a dedicated patient/family room (named Lotus Room). Dying in hospital is a common outcome for people across the world. However, noise and activity in acute environments present barriers to quality end-of-life care. This is of concern because care provided to dying patients has been shown to affect both the patients and the bereaved families. A qualitative descriptive approach was used. Semi-structured interviews were conducted with 17 multidisciplinary staff and seven families provided information through an investigator-developed instrument. Qualitative data analysis generated three categories describing: Dying in an hospital; The Lotus Room; and the Outcomes for patients and families. The Lotus Room was seen as a large, private and, ultimately, safe space for patients and families within the public hospital environment. Family feedback supported staff perspectives that the Lotus Room facilitated family presence and communication. The privacy afforded by the Lotus Room within this acute hospital provided benefits for the dying patients and grieving families. Improved outcomes included a peaceful death for patients, which may have assisted the family with their bereavement. This study provides evidence of how the physical environment can address well-established barriers to quality end-of-life care in acute hospitals. © 2015 John Wiley & Sons Ltd.
Pant, G. S.; Sharma, S. K.; Bal, C. S.; Kumar, R.; Rath, G. K.
The thermoluminescence dosemeter (TLD) was used for measuring radiation dose to family members of thyrotoxicosis and thyroid cancer patients treated with 131 I using CaSO 4 :Dy discs. There were 45 family members of thyrotoxicosis patients, who were divided into two groups with 22 in the first and 23 in the second group. Radiation safety instructions were the same for both the groups except in the second group where the patients were advised to use a separate bed at home for the first 3 d of dose administration. An activity ranging from 185 to 500 MBq was administered to these patients. The whole-body dose to family members ranged from 0.4 to 2.4 mSv (mean 1.1 mSv) in the first group and 0-1.9 mSv (mean 0.6 mSv) in the second group. A total of 297 family members of thyroid cancer patients were studied for whole-body dose estimation. An activity ranging from 0.925 to 7.4 GBq was administered to the thyroid cancer patients. The family members were divided into three groups depending upon the mode of transport and facilities available at home to avoid close proximity with the patient. Group A with 25 family members received a dose ranging from 0 to 0.9 mSv (mean 0.4 mSv), group B with 96 family members received a dose ranging from 0 to 8.5 mSv (mean 0.8 mSv) and group C with 176 family members received a dose ranging from 0 to 5.0 mSv (mean 0.8 mSv). The thyroid monitoring was also done in 103 family members who attended the patients in isolation wards for >2 d. Thyroid dose in them ranged from 0 to 2.5 mGy (mean 0.1 mGy). (authors)
Moatter, T.; Pervez, S.; Khan, S.; Azam, I.
Objective: To determine BRCA1 status in breast carcinoma patients of Pakistani origin. Study Design: Observational study. Place and Duration of Study: The Oncology Clinics of the Aga Khan University Hospital, Karachi, between May 2005 and December 2009. Methodology: Fifty three breast cancer patients based on clinical and laboratory diagnosis were recruited for this study. Moderate family history was defined as having a close relative (mother, daughter, sister) diagnosed with breast cancer under 45 years. Peripheral blood samples were collected from each patient in a 5 ml tube containing EDTA as anticoagulant. Subsequent to DNA extraction, mutational analysis of BRCA1 exons 2, 5, 6, 16, 20 and 22 was carried out using single strand conformation polymorphism (SSCP) assay while protein truncation test (PTT) was used to examine mutations in exon 11. All BRCA1 sequence variants were confirmed by DNA sequencing. Results: Twenty-three patients were diagnosed with early onset breast cancer, 30 patients had moderate family history. At the time of diagnosis, the median age of enrolled patients was 39 years (range 24-65 years). Out of 53 patients, analyzed by SSCP assay, mobility shift was detected in exon 6, 16 and 20 of three patients, whereas one patient was tested positive for mutation in exon 11 by PTT assays. All patients with BRCA1 mutations were further confirmed by DNA sequencing analysis. In exon 16 c.4837A > G was confirmed, which is a common polymorphism reported in several populations including Asians. Moreover, mutations in exon 6 (c.271T > G), exon 20 (c.5231 del G) and exon 11 (c.1123 T > G) were reported first time in the Pakistani population. Several BRCA1 mutations were observed in Pakistani breast cancer patients with moderate family history. Therefore, mutation-based genetic counselling for patients with moderate family history can facilitate management, if one first or second degree relative or early onset disease is apparent. (author)
Lewis, Chrystal L; Taylor, Jessica Z
To determine if current levels of anxiety, depression and acute stress disorder symptoms differ significantly among family members of intensive-care-unit patients depending upon previous intensive-care experience. This study used a prospective, descriptive study design. Family members (N=127) from patients admitted within a 72-hour timeframe to the medical, surgical, cardiac and neurological intensive care units were recruited from waiting rooms at a medium-sized community hospital in the Southeastern United States. Participants completed the Hospital Anxiety and Depression Scale, the Impact of Events Scale-Revised, the Acute Stress Disorder Scale and a demographic questionnaire. A multivariate analysis revealed that family members of intensive-care-unit patients with a prior intensive-care experience within the past two years (n=56) were significantly more likely to report anxiety, depression and acute stress symptoms, Λ=0.92, F =2.70, p=0.034, partial η 2 =0.08, observed power=0.74. Results of this study show that family members' psychological distress is higher with previous familial or personal intensive-care experience. Nurses need to assess for psychological distress in ICU family members and identify those who could benefit from additional support services provided in collaboration with multidisciplinary support professionals. Copyright © 2017 Elsevier Ltd. All rights reserved.
Mazor, Kathleen M.; Beard, Renee L.; Alexander, Gwen L.; Arora, Neeraj K.; Firneno, Cassandra; Gaglio, Bridget; Greene, Sarah M.; Lemay, Celeste A.; Robinson, Brandi E.; Roblin, Douglas W.; Walsh, Kathleen; Street, Richard L.; Gallagher, Thomas H.
Objectives To explore patients’ and family members’ views on communication during cancer care, and to identify those aspects of clinician-patient communication which were most important to patients and family members. Methods We conducted a secondary data analysis of qualitative data from 137 patients with cancer and family members of patients with cancer. We used a modified version of the constant comparative method and coding paradigm of grounded theory. Results Patients want sensitive, caring clinicians who provide information that they need, when they need it, in a way that they can understand; who listen and respond to questions and concerns, and who attempt to understand the patient’s experience. Effective information exchange and a positive interpersonal relationship with the clinician were of fundamental importance to patients and family members. These were interrelated; for instance, failure to provide information a patient needed could damage the relationship, while excellent listening could foster the relationship. Information exchange and relationship were also integral to decision making, managing uncertainty, responding to emotions, and self-management. Clinicians who were responsive to patients’ needs beyond the immediate medical encounter were valued. Conclusions The complexity of cancer care today suggest that efforts to improve communication must be multi-level, acknowledging and addressing patient, clinician, organizational and policy barriers and facilitators. Measurement tools are needed to assess cancer patients’ and family members’ experiences with communication over the course of cancer care in order to provide meaningful, actionable feedback to those seeking to optimize their effectiveness in communicating with patients with cancer. PMID:23780672
Moreira-Nunes, Caroline Aquino; Alcântara, Diego di Felipe Ávila; Lima-Júnior, Sérgio Figueiredo; Cavalléro, Sandro Roberto de Araújo; Rey, Juan Antonio; Pinto, Giovanny Rebouças; de Assumpção, Paulo Pimentel; Burbano, Rommel Rodriguez
To characterize APC gene mutations and correlate them with patient phenotypes in individuals diagnosed with familial adenomatous polyposis (FAP) in northern Brazil. A total of 15 individuals diagnosed with FAP from 5 different families from the north of Brazil were analyzed in this study. In addition to patients with histopathological diagnosis of FAP, family members who had not developed the disease were also tested in order to identify mutations and for possible genetic counseling. All analyzed patients or their guardians signed a consent form approved by the Research Ethics Committee of the João de Barros Barreto University Hospital (Belem, Brazil). DNA extracted from the peripheral blood of a member of each of the affected families was subjected to direct sequencing. The proband of each family was sequenced to identify germline mutations using the Ion Torrent platform. To validate the detected mutations, Sanger sequencing was also performed. The samples from all patients were also tested for the identification of mutations by real-time quantitative polymerase chain reaction using the amplification refractory mutation system. Through interviews with relatives and a search of medical records, it was possible to construct genograms for three of the five families included in the study. All 15 patients from the five families with FAP exhibited mutations in the APC gene, and all mutations were detected in exon 15 of the APC gene. In addition to the patients with a histological diagnosis of FAP, family members without disease symptoms showed the mutation in the APC gene. In the present study, we detected two of the three most frequent germline mutations in the literature: the mutation at codon 1309 and the mutation at codon 1061. The presence of c.3956delC mutation was found in all families from this study, and suggests that this mutation was introduced in the population of the State of Pará through ancestor immigration (i.e., a de novo mutation that arose in one
Huang, William Y; Rogers, John C; Nelson, Elizabeth A; Wright, Crystal C; Teal, Cayla R
Reflection after patient encounters is an important aspect of clinical learning. After our medical school instituted a reflection paper assignment for all clerkships, we wanted to learn about the types of encounters that students found meaningful on a family medicine clerkship and how they impacted students' learning. Family and Community Medicine Clerkship students completed a reflection paper after the clerkship, based on guidelines that were used for all clerkship reflection papers at our medical school. Two reviewers independently organized student responses into themes and then jointly prioritized common themes and negotiated any initial differences into other themes. A total of 272 reflection papers describing an actual learning moment in patient care were submitted during the study period of January 2011--December 2012. In describing actions performed, students most frequently wrote about aspects of patient-centered care such as listening to the patient, carefully assessing the patient's condition, or giving a detailed explanation to the patient. In describing effects of those actions, students wrote about what they learned about the patient-physician interaction, the trust that patients demonstrated in them, the approval they gained from their preceptors, and the benefits they saw from their actions. An important contribution of a family medicine clerkship is the opportunity for students to further their skills in patient-centered care and realize the outcomes of providing that type of care.
Kosteniuk, Julie; Morgan, Debra; Innes, Anthea; Keady, John; Stewart, Norma; D'Arcy, Carl; Kirk, Andrew
Little is known about the views of rural family physicians (FPs) regarding collaborative care models for patients with dementia. The study aims were to explore FPs' views regarding this issue, their role in providing dementia care, and the implications of providing dementia care in a rural setting. This study employed an exploratory qualitative design with a sample of 15 FPs. All rural FPs indicated acceptance of collaborative models. The main disadvantages of practicing rural were accessing urban-based health care and related services and a shortage of local health care resources. The primary benefit of practicing rural was FPs' social proximity to patients, families, and some health care workers. Rural FPs provided care for patients with dementia that took into account the emotional and practical needs of caregivers and families. FPs described positive and negative implications of rural dementia care, and all were receptive to models of care that included other health care professionals.
Segaric, Cheryl Ann; Hall, Wendy A
In this grounded theory study, informed by symbolic interactionism, we explain how nurses, patients, and family members construct relationships in acute care settings, including managing effects of work environments. We recruited participants from 10 acute care units across four community hospitals in a Western Canadian city. From 33 hr of participant observation and 40 interviews with 13 nurses, 17 patients, and 10 family members, we constructed the basic social-psychological process of progressively engaging. Nurses, patients, and family members approached constructing relationships through levels of engagement, ranging from perspectives about "just doing the job" to "doing the job with heart." Progressively engaging involved three stages: focusing on tasks, getting acquainted, and building rapport. Workplace conditions and personal factors contributed or detracted from participants' movement through the stages of the process; with higher levels of engagement, participants experienced greater satisfaction and cooperation. Progressively engaging provides direction for how all participants in care can invest in relationships. © The Author(s) 2014.
Aliberch Raurell, A M; Miquel Aymar, I M
To know the current status for the role of family members in the intensive care unit and its evolution, analyzing areas for improvement and learning about the nursing role. This work is a literature review. The selected articles included two of the key words in their title. Articles before year 2000 were excluded, except some work of great interest. Family members lose their role and suffer a crisis when one of them is at the intensive care unit. Their normal role into the family changes or disappears. Obtaining a participation role increases satisfaction and decreases anxiety in relatives. Nursing professionals are essential in addressing this need. Solving the need for this role decreases anxiety and stress on relatives and patients. Their implication on the patient process enhances and helps professionals to know the patient's background. Copyright © 2014 Elsevier España, S.L.U. y SEEIUC. All rights reserved.
Howell, Doris; Brazil, Kevin
Improvement in the quality of end-of-life (EOL) care is a priority health care issue since serious deficiencies in quality of care have been reported across care settings. Increasing pressure is now focused on Canadian health care organizations to be accountable for the quality of palliative and EOL care delivered. Numerous domains of quality EOL care upon which to create accountability frameworks are now published, with some derived from the patient/family perspective. There is a need to reach common ground on the domains of quality EOL care valued by patients and families in order to develop consistent performance measures and set priorities for health care improvement. This paper describes a meta-synthesis study to develop a common conceptual framework of quality EOL care integrating attributes of quality valued by patients and their families.
Doser, Karoline; Norup, Anne
OBJECTIVE: To investigate caregiver burden and factors associated with caregiver burden among family members of patients with severe brain injury in the chronic phase. Additionally, the study aimed at investigating differences in burden between parents and spouses. METHODS: Forty-four Danish...... caregivers of patients with severe brain injury were contacted 3-6 years post-injury and asked to complete a measure of caregiver burden. RESULTS: Medium, high and low levels of burden were observed in 45%, 16% and 39% of family members, respectively. Higher burden was seen in caregivers of patients...... with more severe injuries, who spent more time on caregiving and reported more unmet needs. Overall, spouses spent significantly more time taking care of their family member than parents and reported higher levels of burden. CONCLUSIONS: The findings emphasized the continuing consequences of brain injury...
Full Text Available Introduction: Following hip fracture surgery, patients often experience multiple transitions through different care settings, with resultant challenges to the quality and continuity of patient care. Family caregivers can play a key role in these transitions, but are often poorly engaged in the process. We aimed to: (1 examine the characteristics of the family caregivers’ experience of communication and information sharing and (2 identify facilitators and barriers of effective information sharing among patients, family caregivers and health care providers. Methods: Using an ethnographic approach, we followed 11 post-surgical hip fracture patients through subsequent care transitions in rural Ontario; in-depth interviews were conducted with patients, family caregivers (n = 8 and health care providers (n = 24. Results: Priority areas for improved information sharing relate to trust and respect, involvement, and information needs and expectations; facilitators and barriers included prior health care experience, trusting relationships and the rural setting. Conclusion: As with knowledge translation, effective strategies to improve information sharing and care continuity for older patients with chronic illness may be those that involve active facilitation of an on-going partnership that respects the knowledge of all those involved.
Full Text Available Introduction: Following hip fracture surgery, patients often experience multiple transitions through different care settings, with resultant challenges to the quality and continuity of patient care. Family caregivers can play a key role in these transitions, but are often poorly engaged in the process. We aimed to: (1 examine the characteristics of the family caregivers’ experience of communication and information sharing and (2 identify facilitators and barriers of effective information sharing among patients, family caregivers and health care providers.Methods: Using an ethnographic approach, we followed 11 post-surgical hip fracture patients through subsequent care transitions in rural Ontario; in-depth interviews were conducted with patients, family caregivers (n = 8 and health care providers (n = 24.Results: Priority areas for improved information sharing relate to trust and respect, involvement, and information needs and expectations; facilitators and barriers included prior health care experience, trusting relationships and the rural setting.Conclusion: As with knowledge translation, effective strategies to improve information sharing and care continuity for older patients with chronic illness may be those that involve active facilitation of an on-going partnership that respects the knowledge of all those involved.
Full Text Available Background: In order to track progress towards the target of universal access to sexual and reproductive health care services of the post-2015 Sustainable Development Goals (SDGs, a measure (demand for family planning satisfied with modern contraceptive methods and a benchmark (at least 75% by 2030 in all countries have been recommended. Objectives: The goal of this study was to assess the prospects of reaching the benchmark at the country level. Such information can facilitate strategic planning, including resource allocation at global and country levels. Design: We selected 63 countries based on their status as least developed according to the United Nations or as a priority country in global family planning initiatives. Using United Nations estimates and projections of family planning indicators between 1970 and 2030, we calculated percent demand for family planning satisfied with modern contraceptive methods for each year and country. We then calculated the annual percentage point changes between 2014 and 2030 required to meet the benchmark. The required rates of change were compared to current projections as well as estimates between 1970 and 2010. Results: To reach the benchmark on average across the 63 countries, demand satisfied with modern methods must increase by 2.2 percentage points per year between 2014 and 2030 – more than double current projections. Between 1970 and 2010, such rapid progress was observed in 24 study countries but typically spanning 5–10 years. At currently projected rates, only 9 of the 63 study countries will reach the benchmark. Meanwhile, the gap between projected and required changes is largest in the Central and West African regions, 0.9 and 3.0 percentage points per year, respectively. If the benchmark is achieved, 334 million women across the study countries will use a modern contraceptive method in 2030, compared to 226 million women in 2014. Conclusions: In order to achieve the component of the SDGs
Choi, Yoonjoung; Fabic, Madeleine Short; Hounton, Sennen; Koroma, Desmond
In order to track progress towards the target of universal access to sexual and reproductive health care services of the post-2015 Sustainable Development Goals (SDGs), a measure (demand for family planning satisfied with modern contraceptive methods) and a benchmark (at least 75% by 2030 in all countries) have been recommended. The goal of this study was to assess the prospects of reaching the benchmark at the country level. Such information can facilitate strategic planning, including resource allocation at global and country levels. We selected 63 countries based on their status as least developed according to the United Nations or as a priority country in global family planning initiatives. Using United Nations estimates and projections of family planning indicators between 1970 and 2030, we calculated percent demand for family planning satisfied with modern contraceptive methods for each year and country. We then calculated the annual percentage point changes between 2014 and 2030 required to meet the benchmark. The required rates of change were compared to current projections as well as estimates between 1970 and 2010. To reach the benchmark on average across the 63 countries, demand satisfied with modern methods must increase by 2.2 percentage points per year between 2014 and 2030 - more than double current projections. Between 1970 and 2010, such rapid progress was observed in 24 study countries but typically spanning 5-10 years. At currently projected rates, only 9 of the 63 study countries will reach the benchmark. Meanwhile, the gap between projected and required changes is largest in the Central and West African regions, 0.9 and 3.0 percentage points per year, respectively. If the benchmark is achieved, 334 million women across the study countries will use a modern contraceptive method in 2030, compared to 226 million women in 2014. In order to achieve the component of the SDGs calling for universal access to sexual and reproductive health services
Pettenati, M J; Rao, P N; Weaver, R G; Thomas, I T; McMahan, M R
We report on a 4-generation family in which Norrie disease occurs together with a pericentric inversion of the X chromosome in all affected males and carrier females. The breakpoint in the short arm of the X chromosome appears to be at the purported location of the Norrie disease gene. This is the second report of an association between Norrie disease and a chromosome aberration involving Xp11, and the first report of a specific gene disruption, thus physical gene location, due to a pericentric chromosome inversion.
Klemenc-Ketis, Zalika; Bulc, Mateja; Kersnik, Janko
Aim To assess patients’ attitudes toward changing unhealthy lifestyle, confidence in the success, and desired involvement of their family physicians in facilitating this change. Methods We conducted a cross-sectional study in 15 family physicians’ practices on a consecutive sample of 472 patients (44.9% men, mean age [± standard deviation] 49.3 ± 10.9 years) from October 2007 to May 2008. Patients were given a self-administered questionnaire on attitudes toward changing unhealthy diet, increasing physical activity, and reducing body weight. It also included questions on confidence in the success, planning lifestyle changes, and advice from family physicians. Results Nearly 20% of patients planned to change their eating habits, increase physical activity, and reach normal body weight. Approximately 30% of patients (more men than women) said that they wanted to receive advice on this issue from their family physicians. Younger patients and patients with higher education were more confident that they could improve their lifestyle. Patients who planned to change their lifestyle and were more confident in the success wanted to receive advice from their family physicians. Conclusion Family physicians should regularly ask the patients about the intention of changing their lifestyle and offer them help in carrying out this intention. PMID:21495204
Bejarano, M; Fuchs, V; Fernández, N; Amancio, O
Uterine cervical cancer represents a public health problem in Mexico; the patients suffer physical and psychological stress leading to depression and weight loss. Eating with a relative has positive effects in food ingestion and depressive status in hospitalized patients. In our society, food is the closest way that family members have to bring care and to show affection to the patient that has less appetite as disease goes on. To establish the relationship between presence of the family during the meals and depresion, food intake, and weight variation during hospitalization. 106 women admitted to the Oncology Department at the General Hospital of Mexico with a diagnosis of CUCA clinical stage II and III were studied in order to improve their condition. Weight and height, diet by means of 24 hour recalls were assessed both at hospital admission and discharge, and Beck's depression inventory was applied; the frequency with which the relatives escorted the patient was recorded. Patients were classified in two groups according to the frequency of family escorting; it was found that 43 patients (40.6%) were accompanied, and 63 patients (59.4%) were not. We did not find significant differences in age and days of hospital stay between the groups (p > 0.05). The escorted patients had more foods available during hospitalization (p < 0.05). Energy consumption (kcal) in escorted patients was higher by 12.7% as compared to non-escorted patients. 76.7% of the escorted patients were depressed, as compared to 55% in the non-escorted group. Significant differences were found with regards to clinical status and presence of depression (p < 0.05) between the study groups. Family escorting does not have an influence on the amount of foods consumed during hospitalization or body weight variation; however, it does have an influence on the presence of depression.
Johansson, Maria; Wåhlin, Ingrid; Magnusson, Lennart; Runeson, Ingrid; Hanson, Elizabeth
The aim of the study was to explore how family members experienced the use of a diary when a relative does not survive the stay in the intensive care unit (ICU). A qualitative method with a hermeneutic approach was used. Nine participants who read/wrote eight diaries in total were interviewed. The collected data were analysed using a hermeneutic technique inspired by Geanellos. The analysis revealed an overall theme 'the diary was experienced as a bridge connecting the past with the future', which was a metaphor referring to the temporal aspect where there was the period with the diary up until the patient's death and then the postbereavement period. The diary contributed to both a rational and emotional understanding of the death of the patient and disclosed glimmers of light that still existed before the illness deteriorated. Further, the diary bridged the space between family members themselves and between family and nursing staff. It helped to maintain a feeling of togetherness and engagement in the care of the patient which family members found comforting. Family members of nonsurvivors had a need to have the ICU time explained and expressed. The diary might work as a form of 'survival kit' to gain coherence and understanding; to meet their needs during the hospital stay; and, finally, to act as a bereavement support by processing the death of the patient. © 2017 Nordic College of Caring Science.
Schubart, Jane R; Kinzie, Mable B; Farace, Elana
The rapid onset and progression of a brain tumor, cognitive and behavioral changes, and uncertainty surrounding prognosis are issues well known to health practitioners in neuro-oncology. We studied the specific challenges that family caregivers face when caring for patients experiencing the significant neurocognitive and neurobehavioral disorders associated with brain tumors. We selected 25 family caregivers of adult brain tumor patients to represent the brain tumor illness trajectory (crisis, chronic, and terminal phases). Interviews documented caregiving tasks and decision-making and information and support needs. Themes were permitted to emerge from the data in qualitative analysis. We found that the family caregivers in this study provided extraordinary uncompensated care involving significant amounts of time and energy for months or years and requiring the performance of tasks that were often physically, emotionally, socially, or financially demanding. They were constantly challenged to solve problems and make decisions as care needs changed, yet they felt untrained and unprepared as they struggled to adjust to new roles and responsibilities. Because the focus was on the patient, their own needs were neglected. Because caregiver information needs are emergent, they are not always known at the time of a clinic visit. Physicians are frequently unable to address caregiver questions, a situation compounded by time constraints and cultural barriers. We provide specific recommendations for (1) improving the delivery of information; (2) enhancing communication among patients, families, and health care providers; and (3) providing psychosocial support for family caregivers.
Exline, Julie J; Prince-Paul, Maryjo; Root, Briana L; Peereboom, Karen S
Anger toward God is a common form of spiritual struggle, one that people often experience when they see God as responsible for severe harm or suffering. The aim of this study was to assess the prevalence, correlates, and preferred coping strategies associated with anger toward God among family members of hospice patients. Teams from a large hospice in the midwestern United States distributed surveys, one per household, to family members of home-care patients. The survey assessed feelings toward God (anger/disappointment and positive feelings), depressive symptoms, religiosity, and perceived meaning. Participants also rated their interest in various strategies for coping with conflicts with God. Surveys (n=134) indicated that 43% of participants reported anger/disappointment toward God, albeit usually at low levels of intensity. Anger toward God was associated with more depressive symptoms, lower religiosity, more difficulty finding meaning, and belief that the patient was experiencing greater pain. Prayer was the most highly endorsed strategy for managing conflicts with God. Other commonly endorsed strategies included reading sacred texts; handling the feelings on one's own; and conversations with friends, family, clergy, or hospice staff. Self-help resources and therapy were less popular options. Anger toward God is an important spiritual issue among family members of hospice patients, one that is commonly experienced and linked with depressive symptoms. It is valuable for hospice staff to be informed about the issue of anger toward God, especially because many family members reported interest in talking with hospice team members about such conflicts.
Wenzhi, He; Ruijin, Wen; Jieliang, Li; Xiaoyan, Ma; Haibo, Liu; Xiaoman, Wang; Jiajia, Xian; Shaoying, Li; Shuanglin, Li; Qing, Li
Waardenburg syndrome (WS) is a rare disease characterized by sensorineural deafness and pigment disturbance. To date, almost 100 mutations have been reported, but few reports on cases with SOX10 gene deletion. The inheritance pattern of SOX10 gene deletion is still unclear. Our objective was to identify the genetic causes of Waardenburg syndrome type II in a two-generation Chinese family. Clinical evaluations were conducted in both of the patients. Microarray analysis and multiplex ligation-dependent probe amplification (MLPA) were performed to identify disease-related copy number variants (CNVs). DNA sequencing of the SOX10, MITF and SNAI2 genes was performed to identify the pathogenic mutation responsible for WS2. A 280kb heterozygous deletion at the 22q13.1 chromosome region (including SOX10) was detected in both of the patients. No mutation was found in the patients, unaffected family members and 30 unrelated healthy controls. This report is the first to describe SOX10 heterozygous deletions in Chinese WS2 patients. Our result conform the thesis that heterozygous deletions at SOX10 is an important pathogenicity for WS, and present as autosomal dominant inheritance. Nevertheless, heterozygous deletion of the SOX10 gene would be worth investigating to understand their functions and contributions to neurologic phenotypes. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.
Auriemma, Catherine L; Lyon, Sarah M; Strelec, Lauren E; Kent, Saida; Barg, Frances K; Halpern, Scott D
No validated conceptual framework exists for understanding the outcomes of patient- and family-centered care in critical care. To explore the meaning of intensive care unit among patients and their families by using freelisting. The phrase intensive care unit was used to prompt freelisting among intensive care unit patients and patients' family members. Freelisting is an anthropological technique in which individuals define a domain by listing all words that come to mind in response to a topic. Salience scores, derived from the frequency with which a word was mentioned, the order in which it was mentioned, and the length of each list, were calculated and analyzed. Among the 45 participants, many words were salient to both patients and patients' family members. Words salient solely for patients included consciousness, getting better, noisy, and personal care. Words salient solely for family members included sadness, busy, professional, and hope. The words suffering, busy, and team were salient solely for family members of patients who lived, whereas sadness, professionals, and hope were salient solely for family members of patients who died. The words caring and death were salient for both groups. Intensive care unit patients and their families define intensive care unit by using words to describe sickness, caring, medical staff, emotional states, and physical qualities of the unit. The results validate the importance of these topics among patients and their families in the intensive care unit and illustrate the usefulness of freelisting in critical care research. ©2015 American Association of Critical-Care Nurses.
Thirsk, Lorraine M; Moore, Sarah G; Keyko, Kacey
To explore how Registered Nurses address psychosocial issues for patients and their families living with chronic kidney disease. It is in the scope of registered nursing practice to address the emotional, psychological and relational implications of living with chronic disease through psychosocial and family interventions. Patients living with chronic kidney disease frequently report poor quality of life and numerous psychosocial issues; however, they do not find that these issues are always adequately addressed. This research was hermeneutic inquiry as guided by Gadamer's philosophy of understanding. Family/psychosocial nursing practices are examined from the perspective of self-reports of Registered Nurses working in acute care nephrology units. Interviews with nurses were conducted throughout 2012. Nurses attribute, or explain, patient and family member behaviour in a variety of ways. These explanations may or may not align with actual patient/family reasons for behaviour. Nurses' explanations influence subsequent nursing practice. While there is some evidence of practices that overcome biased attributions of patient behaviour, the cognitive processes by which nurses develop these explanations are more complex than previously reported in nursing literature. Clinical reasoning and subsequent nursing practice are influenced by how nurses explain patients'/families' behaviour. Exploration of this issue with the support of social cognition literature suggests a need for further research with significant implications for nursing education and practice to improve family/psychosocial interventions. © 2014 John Wiley & Sons Ltd.
Brandi, M.L.; Aurbach, G.D.; Fitzpatrick, L.A.; Quarto, R.; Spiegel, A.M.; Bliziotes, M.M.; Norton, J.A.; Doppman, J.L.; Marx, S.J.
Hyperplasia of the parathyroid glands is a central feature of familial multiple endocrine neoplasia type 1. We used cultured bovine parathyroid cells to test for mitogenic activity in plasma from patients with this disorder. Normal plasma stimulated [ 3 H]thymidine incorporation, on the average, to the same extent as it was stimulated in a plasma-free control culture. This contrasted with the results of the tests with plasma from patients with familial multiple endocrine neoplasia type 1, in which parathyroid mitogenic activity increased 2400 percent over the control value (P less than 0.001). Plasma from these patients also stimulated the proliferation of bovine parathyroid cells in culture, whereas plasma from normal subjects inhibited it. Parathyroid mitogenic activity in plasma from the patients with familial multiple endocrine neoplasia type 1 was greater than that in plasma from patients with various other disorders, including sporadic primary hyperparathyroidism (with adenoma, hyperplasia, or cancer of the parathyroid), sporadic primary hypergastrinemia, sporadic pituitary tumor, familial hypocalciuric hypercalcemia, and multiple endocrine neoplasia type 2 (P less than 0.05). Parathyroid mitogenic activity in the plasma of patients with familial multiple endocrine neoplasia type 1 persisted for up to four years after total parathyroidectomy. The plasma also had far more mitogenic activity in cultures of parathyroid cells than did optimal concentrations of known growth factors or of any parathyroid secretagogue. This mitogenic activity had an apparent molecular weight of 50,000 to 55,000. We conclude that primary hyperparathyroidism in familial multiple endocrine neoplasia type 1 may have a humoral cause
Kim, Seung-Sup; Okechukwu, Cassandra A; Buxton, Orfeu M; Dennerlein, Jack T; Boden, Leslie I; Hashimoto, Dean M; Sorensen, Glorian
A growing body of evidence suggests that work-family conflict is an important risk factor for workers' health and well-being. The goal of this study is to examine association between work-family conflict and musculoskeletal pain among hospital patient care workers. We analyzed a cross-sectional survey of 1,119 hospital patient care workers in 105 units in two urban, academic hospitals. Work-family conflict was measured by 5-item Work-Family Conflict Scale questionnaire. Multilevel logistic regression was applied to examine associations between work-family conflict and self-reported musculoskeletal pain in the past 3 months, adjusting for covariates including work-related psychosocial factors and physical work factors. In fully adjusted models, high work-family conflict was strongly associated with neck or shoulder pain (OR: 2.34, 95% CI: 1.64-3.34), arm pain (OR: 2.79, 95% CI: 1.64-4.75), lower extremity pain (OR: 2.20, 95% CI: 1.54-3.15) and any musculoskeletal pain (OR: 2.45, 95% CI: 1.56-3.85), and a number of body areas in pain (OR: 2.47, 95% CI: 1.82-3.36) in the past 3 months. The association with low back pain was attenuated and became non-significant after adjusting for covariates. Given the consistent associations between work-family conflict and self-reported musculoskeletal pains, the results suggest that work-family conflict could be an important domain for health promotion and workplace policy development among hospital patient care workers. Copyright © 2012 Wiley Periodicals, Inc.
Johansen, Safora; Cvancarova, Milada; Ruland, Cornelia
Although there is significant evidence that the family caregivers (FCs) of cancer patients can experience significant caregiver burden and symptoms, less is known about the relationships between FCs and patient characteristics that influence caregiver burden. The purpose of this study was to examine the effect of cancer patients' and FCs' symptoms and demographic characteristics on caregiver burden at initiation of the patients' radiation treatment. Two hundred eighty-one dyads of FCs and cancer patients who received a diagnosis of breast, prostate, melanoma, lymphoma, and head and neck cancers were recruited at the beginning of the patients' radiation treatment. Measures of depression, sleep disturbance, fatigue, social support, and self-efficacy were obtained from both FCs and cancer patients. The family caregivers were also assessed for caregiver burden. Associations between patients' and caregivers' symptoms and demographic characteristics and caregiver burden were investigated using multivariate analyses. There were significant associations between caregiver burden and the patient-related variables such as self-efficacy (P = .02), sleep disturbance (P = .03), and social support (P = .04). Among FC-related variables, higher scores of depression (P caregiver burden. Being a female, either as a patient or FC, increased the likelihood of experiencing fatigue and sleep disturbance. Caregiver burden in FCs is influenced by interplay of patients' and their own symptoms and problems. These interdependencies exist from the beginning of treatment. Nurses should systematically assess the problems and symptoms of the patients and FCs and support them from the time of diagnosis to help prevent symptom development and deterioration.
The following article illustrates some important factors to consider when designing ambulatory care facilities (ACFs), and focuses on how wayfinding, noise control, privacy, security, color and lighting, general ambience, textures, and nature can have a profound influence on patient and family stress, consumer satisfaction, health and well-being. Other important design issues: convenience and accessibility, accommodation to various populations, consumer and family focus, patient education, image, as well as current equipment needs and future growth are examined in light of the prevailing trends in health care delivery. In sum, this feature explores the important stress-reducing and health-promoting elements involved in successful ACF design.
Passos, E.J.V. de; Toledo Piza, A.F.R. de.
The properties of the subspaces of the many-body Hilbert space which are associated with the use of the Generator Coordinate Method (GCM) in connection with one parameter, and with two-conjugate parameter families of generator states are examined in detail. It is shown that natural orthonormal base vectors in each case are immediately related to Peierls-Voccoz and Peierls-Thouless projections respectively. Through the formal consideration of a canonical transformation to collective, P and Q, and intrinsic degrees of freedom, the properties of the GCM subspaces with respect to the kinematical separation of these degrees of freedom are discussed in detail. An application is made, using the ideas developed in this paper, a) to translation; b) to illustrate the qualitative understanting of the content of existing GCM calculations of giant ressonances in light nuclei and c) to the definition of appropriate asymptotic states in current GCM descriptions of scattering [pt
Labauge, P.; Laberge, S.; Brunereau, L.; Levy, C.; Houtteville, J.P.
Our objective was to determine the natural history and prognostic factors of familial forms of cerebral cavernous malformations (CCM). Cavernomas are one of the most common central nervous system vascular malformations. Familial CCM is increasingly diagnosed, but little is known about its natural history. In a national survey, we analysed clinical and MRI features of 173 patients from 57 unrelated French families. Of these 40 had undergone at least two clinical and MRI examinations. Occurrence of haemorrhage, new lesions, change in signal intensity and size of lesions have been studied by comparison between first and last MRI studies. The CCM were classified according to Zabramski et al. Mean follow-up was 3.2 years (range 0.5-6.5 years). We followed 232 cavernomas (mean 5.9 per patient, range 1-17). Serial MRI demonstrated changes in 28 patients (70 %). Bleeding occurred in 21 lesions (9.1 %) in 14 patients (35 %). The haemorrhagic risk was 2.5 % per lesion-year, higher in type I and brain-stem CCM. We saw 23 new lesions appear in 11 patients (27.5 %), with an incidence of 0.2 lesions per patient year. Signal change was observed in 11 patients (27.5 %), in 14 lesions (6 %), while 9 lesions (3.9 %) in 9 patients (22.5 %) changed significantly in size. (orig.)
Hong, Yan; Ory, Marcia G; Lee, Chanam; Wang, Suojin; Pulczinksi, Jairus; Forjuoh, Samuel N
Primary care practitioners can play a significant role in helping patients adopt healthy behaviors such as physical activity (PA). The aim of this qualitative study was to assess family physicians' understanding and perception of the personal and environmental factors influencing PA, especially walking, and factors affecting their counseling of obese patients about environmental motivators and barriers to PA. We conducted five focus groups with 35 family physicians and 14 family medicine residents in four clinics and a residency program affiliated with CenTexNet, a primary care practice-based research network in central Texas. Data were transcribed and analyzed using thematic content analysis. Physicians were aware of the PA guidelines, but not many actually brought up PA during their counseling of patients. Physicians agreed that neighborhood environments are important for walking and reported that their patients often brought up environmental barriers. Physicians recommended walking as an ideal type of PA for obese patients and sidewalks, parks, and trails/tracks with smooth and soft surfaces as ideal places to engage in walking. However, they rarely talked about these factors with their patients due to a perceived ineffectiveness in counseling, an inability to address environmental factors, and time constraints in the medical encounter. While physicians believe neighborhood environments often present many barriers to PA, they still believe that environmental factors are secondary to personal motivation in promoting PA among obese patients. Physicians, if better informed of the growing evidence on the environment-PA links, may be able to facilitate patients' behavior change more effectively.
Jayalakshmi, Sita; Padmaja, Gaddamanugu; Vooturi, Sudhindra; Bogaraju, Anand; Surath, Mohandas
Psychiatric disorders (PDs) are frequently observed in patients with juvenile myoclonic epilepsy (JME). In this study, we aimed to assess factors associated with PDs in patients with JME. Retrospective analysis of data of 90 consecutive patients with JME was performed. Assessment of DSM-IV Axis I clinical disorders was done using Structured Clinical Interview for Axis I. Diagnosis of PDs is made when the score exceeds the threshold provided by the DSM-IV. We also applied the Global Assessment of Functioning (GAF) scale which is part of the multiaxial evaluation of the DSM-IV (Axis-V). Using seizure frequency score at presentation, we classified subjects into controlled and uncontrolled groups. In the current cohort, 29 (32.2%) patients were diagnosed with PDs. Fewer patients with PDs had family support (48.3% vs. 83.6%; p=0.001). Lifetime prevalence of PDs was higher among patients with current PDs (96.6% vs. 18.0%; pseizure control (7.8% vs. 73.1%; pseizure control. Patients with lack of family support had poor seizure control (0% vs. 36.9%; pseizure control and higher incidence of PDs in patients with JME. Lack of family support increases neither the odds of PDs nor seizure control. Copyright © 2014 Elsevier Inc. All rights reserved.
Adams, Rebecca N; Mosher, Catherine E; Cannady, Rachel S; Lucette, Aurelie; Kim, Youngmee
Although enhanced spiritual well-being has been linked to positive mental health outcomes among family caregivers of cancer patients, little is known regarding predictors of spiritual well-being in this population. The current study aimed to examine caregiving experiences as predictors of change in family caregivers' spiritual well-being during the initial months following the patient's cancer diagnosis. Seventy family caregivers of newly diagnosed cancer patients (74% female, mean age = 59 years) participated in this longitudinal survey. Caregivers completed baseline questionnaires shortly before staying with the patient at an American Cancer Society Hope Lodge. Baseline questionnaires assessed caregiving experiences (i.e., self-esteem related to caregiving, family support for providing care, impact of caregiving on finances, and impact of caregiving on one's schedule). In addition, caregivers' spiritual well-being (i.e., meaning in life, peace, and faith) was assessed at baseline and 4-month follow-up. In univariate analyses, all caregiving experiences studied were associated with one or more aspects of spiritual well-being at 4-month follow-up. However, in the multivariate analysis, the only caregiving experience associated with aspects of spiritual well-being at 4-month follow-up was caregivers' perceptions of family support. Specifically, lack of family support was associated with lower levels of meaning and peace. Findings point to the importance of family support in facilitating the search for meaning and peace shortly after a loved one's cancer diagnosis and suggest that interventions targeting caregivers' support system may enhance their spiritual well-being. Copyright © 2014 John Wiley & Sons, Ltd.
Shin, Dong Wook; Park, Jong Hyock; Kim, So Young; Park, Eal Whan; Yang, Hyung Kook; Ahn, Eunmi; Park, Seon Mee; Lee, Young Joon; Lim, Myong Cheol; Seo, Hong Gwan
We aimed to identify the prevalence of feelings of guilt, censure, and concealment of smoking status among cancer patients and their family members who continued to smoke after the patient's diagnosis. Among 990 patient-family member dyads, 45 patients and 173 family members who continued to smoke for at least 1 month after the patients' diagnoses were administered questions examining feelings of guilt, censure, and smoking concealment. Most patients who continued to smoke reported experiencing feelings of guilt toward their families (75.6%) and censure from their family members (77.8%), and many concealed their smoking from their family members (44.4%) or healthcare professionals (46.7%). Family members who continued to smoke also reported feelings of guilt with respect to the patient (63.6%) and that the patient was critical of them (68.9%), and many concealed their smoking from the patient (28.5%) or healthcare professionals (9.3%). Patients' feeling of guilt was associated with concealment of smoking from family members (55.9% vs. 10.0%) or health care professionals (55.9% vs. 20.0%). Family members who reported feeling guilty (36.5% vs. 16.3%) or censured (34.5% vs. 16.7%) were more likely to conceal smoking from patients. Many patients and family members continue to smoke following cancer diagnosis, and the majority of them experience feelings of guilt and censure, which can lead to the concealment of smoking status from families or health care professionals. Feelings of guilt, censure, and concealment of smoking should be considered in the development and implementation of smoking cessation programs for cancer patients and family members. Copyright © 2013 John Wiley & Sons, Ltd.
Bucknall, Tracey K; Hutchinson, Alison M; Botti, Mari; McTier, Lauren; Rawson, Helen; Hewitt, Nicky A; McMurray, Anne; Marshall, Andrea P; Gillespie, Brigid M; Chaboyer, Wendy
To describe an integrative review protocol to analyse and synthesize peer-reviewed research evidence in relation to engagement of patients and their families in communication during transitions of care to, in and from acute care settings. Communication at transitions of care in acute care settings can be complex and challenging, with important information about patients not always clearly transferred between responsible healthcare providers. Involving patients and their families in communication during transitions of care may improve the transfer of clinical information and patient outcomes and prevent adverse events during hospitalization and following discharge. Recently, optimizing patient and family participation during care transitions has been acknowledged as central to the implementation of patient-centred care. Integrative review with potential for meta-analysis and application of framework synthesis. The review will evaluate and synthesize qualitative and quantitative research evidence identified through a systematic search. Primary studies will be selected according to inclusion criteria. Data collection, quality appraisal and analysis of the evidence will be conducted by at least two authors. Nine electronic databases (including CINAHL and Medline) will be searched. The search will be restricted to 10 years up to December 2013. Data analysis will include content and thematic analysis. The review will seek to identify all types of patient engagement activities employed during transitions of care communication. The review will identify enablers for and barriers to engagement for patients, families and health professionals. Key strategies and tools for improving patient engagement, clinical communication and promoting patient-centred care will be recommended based on findings. © 2016 The Authors. Journal of Advanced Nursing Published by John Wiley & Sons Ltd.
Jeong, Ansuk; An, Ji Yeong; Park, Jong Hyock; Park, Keeho
When cancer hits a family, the entire family members start to adapt to the new status. This study aimed to investigate the main issue of the family with cancer patient and their way of solving it. In-depth interviews were conducted as a qualitative research. Thirty-three participants described their experience either as cancer patients or as family caregivers. Guided by the grounded theory, we identified the main concern of the families being primary caregiver selection. The primary caregiver was determined by the conditions of the patient and the family, but the primary caregiver accepted his/her role believing no alternative was plausible in the family. The processes of the entire family have change since cancer showed their "adapting living," which was identified as the core variable. On the basis of the current study's limitations, suggestions were made for future studies in which cultural attributes are distinguished from the medical system attributes. Copyright © 2016 John Wiley & Sons, Ltd.
Coyne, Elisabeth; Dieperink, K. B.; Østergaard, Birte
Purpose Family plays an essential role in supporting the patient with cancer, however, relatively little attention has been given to understanding the strengths and resources of the family unit across different settings and countries. This study aims to investigate the strengths and resources...... of patients and family members in Australia and Denmark. Methods Using a descriptive, cross-sectional design, 232 patient and family participants from inpatient and outpatient oncology services in Australia and Denmark completed paper based surveys that included the Family Hardiness Index (FHI) and Family...... Crisis Orientated Personal Evaluation Scales (F-COPES), together with demographic and health information. Results The family's appraisal of the cancer and ways the family worked together predicted the level of external resources used to manage their circumstances. Conclusion After a cancer diagnosis...
Rajatanavin, R.; Fournier, L.; DeCosimo, D.; Abreau, C.; Braverman, L.E.
A study was done to ascertain whether the serum free T4 measured by free T4 radioimmunoassay kits would, like equilibrium dialysis, be normal in patients with familial dysalbuminemic hyperthyroxinemia. Five free T4 radioimmunoassay kits were used to measure free T4 in serum samples from 19 patients with familial dysalbuminemic hyperthyroxinemia and 20 healthy volunteers. Values (mean +/- SE) for T4, free T4 index, and free T4 (equilibrium dialysis) in these normal subjects and patients with familial dysalbuminemic hyperthyroxinemia, respectively, were as follows: T4, 8.1 +/- 0.2 and 18.3 +/- 0.7 μg/dL; free T4 index, 3.1 +/- 0.1 and 7.3 +/- 0.3 μg/dL; free T4, 1.4 +/- 0.1 and 1.2 +/- 0.1 ng/dL. The following free T4 radioimmunoassay methods were used: antibody coated microfine silica, microencapsulated antibody, two-step antibody-coated tube, and one-step 125 I-T4 analog (2 kits). The present findings in patients with familial dysalbuminemic hyperthyroxinemia and previous observations in ill euthyroid patients suggest that serum free T4 measured by some radioimmunoassay methods must be interpreted with caution in these two clinical situations
Osman, C B; Alipah, B; Tutiiryani, M D; Ainsah, O
To determine the prevalence of depressive disorders among caregivers of patients with schizophrenia, its association with patient's and caregiver's socio-demographic characteristics and family functioning. This was a cross-sectional study of caregivers of patients with schizophrenia at the outpatient clinic, Hospital Permai Johor Bahru, Malaysia. The study was conducted between August and October 2008. A total of 243 caregivers who fulfilled the inclusion criteria were enrolled, of whom 232 completed the self-administered socio-demographic questionnaire, the General Health Questionnaire (GHQ-30) and the McMaster Family Assessment Device. A total of 33 caregivers with the GHQ-30 cut-off point of 7/8 were assessed further by the Mini International Neuropsychiatric Interview to diagnose depressive disorder. The prevalence of psychological distress in our study sample was 14% (n = 33) and that of depressive disorders was 6% (n = 14). There was no association between patients' and caregivers' socio-demographic characteristics with depressive disorders, but there were significant associations between depressive disorders and family functioning dimensions in terms of Communication and Roles. Although the causal link was not established, the results suggested that depression had a significant association with family functioning among caregivers of patients with schizophrenia.
Yesilbalkan, Oznur Usta; Ozkutuk, Nilay; Ardahan, Melek
The purpose of this study was to compare the quality of life (QoL) of cancer patients and their family caregivers and determine associations. A total of 93 paired patients and caregivers from an outpatient chemotherapy unit of the oncology units were recruited at a large university hospital in İzmir, all completing the Quality of Life Scale (QoLS). The mean age of patients was 45.2 years, and of their family caregivers was 40.5. The results indicated that the patients perceived a poorer quality of life than their family caregivers. There was a middle and positive correlation between the social participation and work performance dimensions of patients' QoL and social participation and work performance dimension of family caregivers' QoL (r =0.273, p 0.05). Caregivers' employment status was found to have an affect on their quality of life (p ommunication skills, financial planning and distress management skills and be given spiritual support to decrease effects of cancer on their quality of life.
Abbaszadeh, Abbas; Ehsani, Seyyedeh Roghayeh; Begjani, Jamal; Kaji, Mohammad Akbari; Dopolani, Fatemeh Nemati; Nejati, Amir; Mohammadnejad, Esmaeil
Breaking bad news is quite often not done in an effective manner in clinical settings due to the medical staff lacking the skills necessary for speaking to patients and their families. Bad news is faced with similar reactions on the part of the news receiver in all cultures and nations. The purpose of this study was to explore the perspectives of Iranian nurses on breaking bad news to patients and their families. In this research, a qualitative approach was adopted. In-depth and semi-structured interviews were conducted with 19 nurses who had at least one year work experience in the ward, and content analysis was performed to analyze the data. Five major categories emerged from data analysis, including effective communication with patients and their families, preparing the ground for delivering bad news, minimizing the negativity associated with the disease, passing the duty to physicians, and helping patients and their families make logical treatment decisions. The results of this study show that according to the participants, it is the physicians' duty to give bad news, but nurses play an important role in delivering bad news to patients and their companions and should therefore be trained in clinical and communicative skills to be able to give bad news in an appropriate and effective manner.
Chappell, Phylliss M; Healy, Jennifer; Lee, Shuko; Medellin, Glen; Sanchez-Reilly, Sandra
The need for end-of-life (EOL), high-impact education initiatives to prepare medical students to communicate with dying patients and their families and to cope with issues of death and dying, is well recognized. Third-year medical students (n = 224), during their ambulatory rotation, completed a multimedia EOL curriculum, which included pre-/posttests, an online case-based module, didactic presentation, and a tablet computer application designed to demonstrate the signs and symptoms seen in the last hours of life for families of dying patients. Pre- and posttests were compared using Pearson χ 2 or Fisher exact test, and improvement was measured by weighted κ coefficient. On preintervention surveys, the majority of students demonstrated positive attitudes toward the care of dying patients and their families. Despite this high pretest positive attitude, there was a statistically significant overall positive attitude change after the intervention. The lowest pretest positive attitudes and lowest posttest positive attitude shifts, although all statistically improved, involved addressing the thoughts and feelings of dying patients and in coping with their own emotional response. Medical students exposure to this multimedia EOL curriculum increases positive attitudes in caring for dying patients and their families.
Full Text Available OBJECTIVE: Although patients with anorexia nervosa (AN present positive responses to family therapy, the key features of therapeutic changes still require identification. This study explores the role of conflictual communication and affiliative nonverbal behaviour in therapeutic change in brief strategic family therapy (BSFT for AN patients. METHODS: Ten female AN patients and their parents were included in the sample and took part in a 6-month follow-up of BSFT. The durations of conflictual communication and of affiliative nonverbal behaviour estimated by eye contact were compared between the first and the last sessions of family-based treatment using nonparametric statistical tests. RESULTS: An increase of the Body Mass Index associated with an increase in the conflictual communication expressed during BSFT sessions were observed. Moreover, affiliative nonverbal behaviour expressed by the father and the patient decrease, after a BSFT follow-up, in conflictual situations only. By contrast, no significant difference was observed in affiliative nonverbal behaviour expressed by the mother. CONCLUSION: The present study demonstrates that the impact of the BSFT differs between members of a family: the AN patient and the father have established a new form of emotional functioning with a decrease in emotional involvement. The study of the combination between verbal and nonverbal communication can represent an important step in the understanding of the mechanisms of therapeutic change.
Yang, Huiqin; Li, Shiqiang; Xiao, Xueshan; Guo, Xiangming; Zhang, Qingjiong
To screen mutations in the norrin (NDP) gene in 44 unrelated Chinese patients with familial exudative vitreoretinopathy (FEVR, 38 cases) or Norrie disease (6 cases) and to describe the associated phenotypes. Of the 44 patients, mutation in FZD4, LRP5, and TSPAN12 was excluded in 38 patients with FEVR in previous study. Sanger sequencing was used to analyze the 2 coding exons and their adjacent regions of NDP in the 44 patients. Clinical data were presented for patients with mutation. NDP variants in 5 of the 6 patients with Norrie disease were identified, including a novel missense mutation (c.164G>A, p.Cys55Phe) in one patient, two known missense mutations (c.122G>A, p.Arg41Lys; c.220C>T, p.Arg74Cys) in two patients, and a gross deletion encompassing the two coding exons in two patients. Of the 5 patients, 3 had a family history and 2 were singleton cases. No mutation in NDP was detected in the 38 patients with FEVR. NDP mutations are common cause of Norrie disease but might be rare cause for FEVR in Chinese.
Post, Robert M.; Altshuler, Lori L.; Kupka, Ralph; McElroy, Susan L.; Frye, Mark A.; Rowe, Michael; Grunze, Heinz; Suppes, Trisha; Keck, Paul E.; Nolen, Willem A.
Background: Patients with bipolar disorder from the US have more early-onset illness and a greater familial loading for psychiatric problems than those from the Netherlands or Germany (abbreviated here as Europe). We hypothesized that these regional differences in illness burden would extend to the
Cappelen, Tone; Amundsen, Anne Lise; Kravdal, Gunnhild; Unhjem, Jan Frede; Foelling, Ivar
The purpose of this study was twofold: (1) to measure the radiation exposure to family members of out-patients with thyrotoxicosis treated with radioiodine, 131 I, using the recommendations from the European Commission (EC) guidance and age-specific periods for behaviour restrictions; (2) to use the results to identify necessary restrictions to ensure recommended dose constraints. The study population comprised 76 family members (46 adults and 30 children below the age of 18) of 42 patients. The patients were treated with an average activity of 417 MBq (range 260-600 MBq). They received oral and written EC recommendations about behaviour restrictions (translated into Norwegian). On the day of treatment we repeated the oral instructions to the patient and an adult family member. The time periods for restrictions were 14 days for children aged 0-10 years, 7 days for persons aged 11-59 years and 3 days for persons aged 60 years and older. Family members wore a thermoluminescent dosimeter (TLD) on each wrist day and night for 2 weeks. The doses received were adjusted to give an estimate of the expected values if the TLDs had been worn indefinitely. Radiation doses well below the recommended dose constraints were measured for all adult family members and children, except one 2-year-old child; in the latter case the mother probably did not comply with the instructions given. The radiation dose to family members of thyrotoxic patients treated with up to 600 MBq of radioiodine is well below recommended dose constraints if EC instructions are given and compliance is adequate. The duration of restrictions for various age groups used in this study may be considered when establishing guidelines in Norway. (orig.)
Chan, Priscilla T; Doan, Stacey N; Tompson, Martha C
The present study examined stress generation in a developmental and family context among 171 mothers and their preadolescent children, ages 8-12 years, at baseline (Time 1) and 1-year follow-up (Time 2). In the current study, we examined the bidirectional relationship between children's depressive symptoms and dependent family stress. Results suggest that children's baseline level of depressive symptoms predicted the generation of dependent family stress 1 year later. However, baseline dependent family stress did not predict an increase in children's depressive symptoms 1 year later. In addition, we examined whether a larger context of both child chronic strain (indicated by academic, behavioral, and peer stress) and family factors, including socioeconomic status and parent-child relationship quality, would influence the stress generation process. Although both chronic strain and socioeconomic status were not associated with dependent family stress at Time 2, poorer parent-child relationship quality significantly predicted greater dependent family stress at Time 2. Child chronic strain, but neither socioeconomic status nor parent-child relationship quality, predicted children's depression symptoms at Time 2. Finally, gender, maternal depression history, and current maternal depressive symptoms did not moderate the relationship between level of dependent family stress and depressive symptoms. Overall, findings provide partial support for a developmental stress generation model operating in the preadolescent period.
Vousoura, Eleni; Verdeli, Helen; Warner, Virginia; Wickramaratne, Priya; Baily, Charles David Richard
Research suggests a link between parental divorce and negative child outcomes; however, the presence of parental depression may confound this relationship. Studies exploring the simultaneous effects of depression and parents’ divorce on the adjustment of their children are scarce and rarely have a longitudinal design. This is the first three-generation study of the relative effects of depression and divorce on offspring psychopathology, based on data from a 25-year longitudinal study with fam...
Full Text Available Introduction: This work’s objective is to compare third and second generation assays in patients with normal kidney function and in chronic hemodialysis patients, and the implications on the latter. Methods: 60 chronic hemodialysis patients and 40 patients with normal kidney function were studied and their PTH levels were measured for both assays. Results: In patients population with normal kidney function the average on PTH was 51.8 and 45.6 pg/ml with second and third generation assays respectively. In chronic hemodialysis patients the average PTH was 193.9 and 137.1 pg/ml with second and third generation assays respectively. The difference between assays was 11.3% and 29.3% in patients with normal kidney function and in hemodialysis patients respectively. Third generation assay caused a variation in the amount of patients that fall over seve ral PTH ranges according to KDIGO guidelines, for a lesser value of 2 times the reference upper limit: it changes from 20 to 25 patients, between 2 and 9 times: it changes from 31 to 32 patients, and more than 9 times: it changes from 9 to 3 patients. Conclusions: When PTH concentration increases the difference between both assays also increases, for this reason we cannot use them indiscriminately in a chronic hemodialysis patient population. With third generation assays 11 patients (18.3% changed their classification according to KDIGO guidelines, which will result in a change of treatment.
Stamp, Kelly D.; Dunbar, Sandra B.; Clark, Patricia C.; Reilly, Carolyn M.; Gary, Rebecca A.; Higgins, Melinda; Ryan, Richard M
Background Heart failure self-care requires confidence in one’s ability and motivation to perform a recommended behavior. Most self-care occurs within a family context, yet little is known about the influence of family on heart failure self-care or motivating factors. Aims To examine the association of family functioning and the self-care antecedents of confidence and motivation among heart failure participants and determine if a family partnership intervention would promote higher levels of perceived confidence and treatment self-regulation (motivation) at four and eight months compared to patient-family education or usual care groups. Methods Heart failure patients (N = 117) and a family member were randomized to a family partnership intervention, patient-family education or usual care groups. Measures of patient’s perceived family functioning, confidence, motivation for medications and following a low-sodium diet were analyzed. Data were collected at baseline, four and eight months. Results Family functioning was related to self-care confidence for diet (p=.02) and autonomous motivation for adhering to their medications (p=.05 and diet p=0.2). The family partnership intervention group significantly improved confidence (p=.05) and motivation (medications (p=.004; diet p=.012) at four months whereas patient-family education group and usual care did not change. Conclusion Perceived confidence and motivation for self-care was enhanced by family partnership intervention, regardless of family functioning. Poor family functioning at baseline contributed to lower confidence. Family functioning should be assessed to guide tailored family-patient interventions for better outcomes. PMID:25673525
Małkiewicz-Borkowska, M; Namysłowska, I; Siewierska, A; Puzyńska, E; Sredniawa, H; Zechowski, C; Iwanek, A; Ruszkowska, E
The relation of some family characteristics such as cohesion and adaptability with organic risk factors, developmental psychopathology, clinical picture and premorbid adjustment was assessed in the group of 100 hospitalized adolescent patients and families. We found correlation between: some of organic risk factors (pathology of neonatal period, pathology of early childhood), some of indicators of developmental psychopathology (eating disorders, conduct disorders), some of clinical signs (mannerism, grandiosity, hostility, suspciousness, disturbances of content of thinking), premorbid adjustment, and variables related to families, described before. We think that biological variables characterizing child (pathology of neonatal period, pathology of early childhood) have an influence on some family characteristics as independent variable. General system theory and circular thinking support these conclusions. In order to verify them, it is necessary to undertake further investigations, based on other methodology, using this results as preliminary findings.
Full Text Available Background: Vegetative state (VS occurs through return of the brain stem after coma state. After hospital discharge, responsibility of caring for VS patients is transferred to their families, which causes a high burden on them. Nurses have an important role in helping the family caregivers to meet their needs and cope with difficulties. To explore the role of nurses during coping process of family caregivers of VS patients. Methods: This study is a part of a larger qualitative study which was performed in Kerman province, Iran during 2014- 2015. Purposive and theoretical sampling was used. 14 caregivers participated in the study. Data were gathered using face-to-face in-depth interviews and managed by MAXQDA 10 software. Analysis was done through constant Comparative Method. Results: Three themes of “nurse as a pursuer teacher”, “nurse as a compassionate caregiver”, and “nurse as a supporter” were derived from analysis that represent various roles of a nurse in the coping process of family caregivers of vegetative patients during the care process. Conclusion: Nurses can play an effective role in improving the caregivers’ well-being by considering the importance of training at discharge time and during home care, helping families in providing care and support them during care process.
Full Text Available Objective: The aim of this study was to explore the burden of care for patients undergoing hemodialysis from the experiences of family caregivers. Methods: In this qualitative study, a content analysis approach was used for data collection and analysis. Participants were 16 family caregivers selected through purposive sampling from four medical education centers affiliated with Ahvaz Jundishapur University of Medical Sciences, Iran. Semi-structured interviews were held to collect data. Results: Four categories were developed as follows: ‘care challenges’, ‘psychological vulnerabilities’, ‘the chronic nature of care ’and “care in the shade”. The categories led to the development of the main theme of ‘progressive exhaustion’ experienced by the family caregivers during the provision of care to patients undergoing hemodialysis. Conclusion: Family caregivers have a significant role in the process of patient care, and this role leads them to progressive exhaustion; therefore, the overall health of the caregivers should be taken into account and more attention should be paid to their quality of life, social welfare, and satisfaction level. Keywords: Family caregivers, Hemodialysis, Progressive exhaustion, Qualitative study
Emad A Mohammed
Full Text Available Background: The use of electronic health records (EHRs has continued to increase within healthcare systems in the developed and developing nations. EHRs allow for increased patient safety, grant patients easier access to their medical records, and offer a wealth of data to researchers. However, various bioethical, financial, logistical, and information security considerations must be addressed while transitioning to an EHR system. The need to encrypt private patient information for data sharing is one of the foremost challenges faced by health information technology. Method: We describe the usage of the message digest-5 (MD5 and secure hashing algorithm (SHA as methods for encrypting electronic medical data. In particular, we present an application of the MD5 and SHA-1 algorithms in encrypting a composite message from private patient information. Results: The results show that the composite message can be used to create a unique one-way encrypted ID per patient record that can be used for data sharing. Conclusion: The described software tool can be used to share patient EMRs between practitioners without revealing patients identifiable data.
Mohammed, Emad A; Slack, Jonathan C; Naugler, Christopher T
The use of electronic health records (EHRs) has continued to increase within healthcare systems in the developed and developing nations. EHRs allow for increased patient safety, grant patients easier access to their medical records, and offer a wealth of data to researchers. However, various bioethical, financial, logistical, and information security considerations must be addressed while transitioning to an EHR system. The need to encrypt private patient information for data sharing is one of the foremost challenges faced by health information technology. We describe the usage of the message digest-5 (MD5) and secure hashing algorithm (SHA) as methods for encrypting electronic medical data. In particular, we present an application of the MD5 and SHA-1 algorithms in encrypting a composite message from private patient information. The results show that the composite message can be used to create a unique one-way encrypted ID per patient record that can be used for data sharing. The described software tool can be used to share patient EMRs between practitioners without revealing patients identifiable data.
Steinauer, Jody E; Turk, Jema K; Preskill, Felisa; Devaskar, Sangita; Freedman, Lori; Landy, Uta
Obstetrics and gynecology residency programs are required to provide access to abortion training, but residents can opt out of participating for religious or moral reasons. Quantitative data suggest that most residents who opt out of doing abortions participate and gain skills in other aspects of the family planning training. However, little is known about their experience and perspective. Between June 2010 and June 2011, we conducted semistructured interviews with current and former residents who opted out of some or all of the family planning training at ob-gyn residency programs affiliated with the Kenneth J. Ryan Residency Training Program in Abortion and Family Planning. Residents were either self-identified or were identified by their Ryan Program directors as having opted out of some training. The interviews were transcribed and coded using modified grounded theory. Twenty-six physicians were interviewed by telephone. Interviewees were from geographically diverse programs (35% Midwest, 31% West, 19% South/Southeast and 15% North/Northeast). We identified four dominant themes about their experience: (a) skills valued in the family planning training, (b) improved patient-centered care, (c) changes in attitudes about abortion and (d) miscommunication as a source of negative feelings. Respondents valued the ability to partially participate in the family planning training and identified specific aspects of their training which will impact future patient care. Many of the effects described in the interviews address core competencies in medical knowledge, patient care, communication and professionalism. We recommend that programs offer a spectrum of partial participation in family planning training to all residents, including residents who choose to opt out of doing some or all abortions. Learners who morally object to abortion but participate in training in family planning and abortion, up to their level of comfort, gain clinical and professional skills. We
Kondo, Hiroyuki; Qin, Minghui; Kusaka, Shunji; Tahira, Tomoko; Hasebe, Haruyuki; Hayashi, Hideyuki; Uchio, Eiichi; Hayashi, Kenshi
To search for mutations in the Norrie disease gene (NDP) in Japanese patients with familial exudative vitreoretinopathy (FEVR) and Norrie disease (ND) and to delineate the mutation-associated clinical features. Direct sequencing after polymerase chain reaction of all exons of the NDP gene was performed on blood collected from 62 probands (31 familial and 31 simplex) with FEVR, from 3 probands with ND, and from some of their family members. The clinical symptoms and signs in the patients with mutations were assessed. X-inactivation in the female carriers was examined in three FEVR families by using leukocyte DNA. Four novel mutations-I18K, K54N, R115L, and IVS2-1G-->A-and one reported mutation, R97P, in the NDP gene were identified in six families. The severity of vitreoretinopathy varied among these patients. Three probands with either K54N or R115L had typical features of FEVR, whereas the proband with R97P had those of ND. Families with IVS2-1G-->A exhibited either ND or FEVR characteristics. A proband with I18K presented with significant phenotypic heterogeneity between the two eyes. In addition, affected female carriers in a family harboring the K54N mutation presented with different degrees of vascular abnormalities in the periphery of the retina. X-inactivation profiles indicated that the skewing was not significantly different between affected and unaffected women. These observations indicate that mutations of the NDP gene can cause ND and 6% of FEVR cases in the Japanese population. The X-inactivation assay with leukocytes may not be predictive of the presence of a mutation in affected female carriers.
Kim, Young Mi; Heerey, Michelle; Kols, Adrienne
Family planning programmes in developing countries need a better understanding of nurse-patient communication in order to improve the quality of counselling. To identify factors in the clinic and in the community that enable nurses and patients to communicate effectively with one another. The study explored the personal experiences of nurses and patients who communicate especially effectively during family planning consultations (so-called "positive deviants"). Sixty-four randomly selected public clinics located in East Java, Indonesia. Seven positive deviant nurses and 32 positive deviant patients were identified from among 64 nurses and 768 patients who participated in an earlier patient coaching study. Flooding prevented 5 patients from participating in the study, reducing their number to 27. Investigators conducted: (1) a content analysis of qualitative data collected by structured in-depth interviews and focus-group discussions (FGDs) with positive deviant nurses and patients, and (2) analyses of variance (ANOVA) of quantitative data on clinic, nurse, and patient characteristics. Positive deviant nurses identified four factors, listed in rough order of importance, that helped them communicate effectively: independent study to strengthen their knowledge and skills; communication aids; feedback from colleagues; and motivation stemming from a desire to help people, patients' appreciation, husband's support, and increased income. Positive deviant patients identified five enabling factors: motivation due to their need for a service; confidence in their own communication skills; positive feedback from nurses; belief in patients' right and responsibility to communicate with nurses; and communication aids. Insights from positive deviant nurses and patients suggest that efforts to improve nurse-patient communication should go beyond conventional communication skills training. Managers should consider a mix of clinic-based interventions (such as peer feedback
Chang, Feng; Paramsothy, Thivaher; Roche, Matthew; Gupta, Nishi S
Aim To conduct an environmental scan of a rural primary care clinic to assess the feasibility of implementing an e-communications system between patients and clinic staff. Increasing demands on healthcare require greater efficiencies in communications and services, particularly in rural areas. E-communications may improve clinic efficiency and delivery of healthcare but raises concerns about patient privacy and data security. We conducted an environmental scan at one family health team clinic, a high-volume interdisciplinary primary care practice in rural southwestern Ontario, Canada, to determine the feasibility of implementing an e-communications system between its patients and staff. A total of 28 qualitative interviews were conducted (with six physicians, four phone nurses, four physicians' nurses, five receptionists, one business office attendant, five patients, and three pharmacists who provide care to the clinic's patients) along with quantitative surveys of 131 clinic patients. Findings Patients reported using the internet regularly for multiple purposes. Patients indicated they would use email to communicate with their family doctor for prescription refills (65% of respondents), appointment booking (63%), obtaining lab results (60%), and education (50%). Clinic staff expressed concerns about patient confidentiality and data security, the timeliness, complexity and responsibility of responses, and increased workload. Clinic staff members are willing to use an e-communications system but clear guidelines are needed for successful adoption and to maintain privacy of patient health data. E-communications might improve access to and quality of care in rural primary care practices.
Godoy-Matos, Amélio F; Moreira, Rodrigo O; MacDowell, Renata; Bendet, Izidro; Mory, Patrícia B; Moises, Regina S
To determine Retinol Binding Protein 4 (RBP4) levels in patients with Familial Partial Lipodystrophy (FPLD). Ten patients with FPLD and a control group (9 patients) were selected to participate in the study. RBP4-log levels were lower in patients with FPLD in comparison to control group (1.52 +/- 0.32 vs 1.84+/-0.25, p=0.029). A statistical trend was observed between Waist-to-Hip Ratio and RBP4-log (r=-0.44, p=0.054). RBP4 levels are decreased in FPLD.
Jensen, J M; Gerdes, Lars Ulrik; Jensen, H K
OBJECTIVES: Existing algorithms of risk of coronary heart disease (CHD) do not pertain to patients with familial hypercholesterolaemia (FH), whose arteries have been exposed to hypercholesterolaemia since birth. We studied a cohort of FH patients to compare four diagnostic models of CHD: traditio......OBJECTIVES: Existing algorithms of risk of coronary heart disease (CHD) do not pertain to patients with familial hypercholesterolaemia (FH), whose arteries have been exposed to hypercholesterolaemia since birth. We studied a cohort of FH patients to compare four diagnostic models of CHD......: traditional risk factors of CHD (age, sex, cholesterol, hypertension, smoking and body mass index), cholesterol year score, and aortic as well as coronary calcium measured by spiral computed tomography (CT). SUBJECTS: We invited 88 individuals with molecularly defined FH of whom 80 (91%) decided...
Domenech, M.; Tizzano, E.; Baiget, M. [Hospital de Sant Pau, Barcelona (Spain); Altisent, C. [Hospital Vall d`Hebron, Barcelona (Spain)
Intron 22 is the largest intron of the factor VIII gene and contains a CpG island from which two additional transcripts originate. One of these transcripts corresponds to the F8A gene which have telomeric extragenic copies in the X chromosome. An inversion involving homologous recombination between the intragenic and the distal or proximal copies of the F8A gene has been recently described as a common cause of severe hemophilia A (HA). We analyzed intron 22 rearrangements in 195 HA patients (123 familial and 72 sporadic cases). According to factor VIII levels, our sample was classified as severe in 114 cases, moderate in 29 cases and mild in 52 cases. An intron 22 (F8A) probe was hybridized to Southern blots of BcII digested DNA obtained from peripheral blood. A clear pattern of altered bands identifies distal or proximal inversions. We detected an abnormal pattern identifying an inversion in 49 (25%) of the analyzed cases. 43% of severe HA patients (49 cases) showed an inversion. As expected, no inversion was found in the moderate and mild group of patients. We found a high proportion (78%) of the distal rearrangement. From 49 identified inversions, 33 were found in familial cases (27%), while the remaining 15 were detected in sporadic patients (22%) in support that this mutational event occurs with a similar frequency in familial or sporadic cases. In addition, we detected a significant tendency of distal inversion to occur more frequently in familial cases than in sporadic cases. Inhibitor development to factor VIII was documented in approximately 1/3 of the patients with inversion. The identification of such a frequent molecular event in severe hemophilia A patients has been applied in our families to carrier and prenatal diagnosis, to determine the origin of the mutation in the sporadic cases and to detect the presence of germinal mosaicism.
Vaona, Alberto; Del Zotti, Franco; Girotto, Sandro; Marafetti, Claudio; Rigon, Giulio; Marcon, Alessandro
Studies on data collection and quality of care in Italian family medicine are lacking. The aim of this study was to assess the completeness of data collection of patients with diabetes in a large sample of family physicians in the province of Verona, Veneto region, a benchmark for the Italian National Health System. We extracted the data on all the patients with diabetes from the electronic health records of 270 family physicians in 2006 and 2009. We reported the percentage of patients with data recorded for 12 indicators of performance derived from the National Institute for Clinical Excellence diabetes guidelines. Secondarily, we assessed quality of care using the Q-score (the lower the score, the greater the risk of cardiovascular events). Patients with diabetes were 18,507 in 2006 and 20,744 in 2009, and the percentage of patients registered as having diabetes was 4.9% and 5.4% of the total population, respectively (p Data collection improved for all the indicators between 2006 and 2009 but the performance was still low at the end of the study period: patients with no data recorded were 42% in 2006 and 32% in 2009, while patients with data recorded for ≥5 indicators were 9% in 2006 and 17% in 2009. The Q-score improved (mean ± SD, 20.7 ± 3.0 in 2006 vs 21.3 ± 3.6 in 2009, p data collection and quality of care for patients with diabetes during the study period. Nonetheless, data collection was still unsatisfactory in comparison with international benchmarks in 2009. Structural interventions in the organization of family medicine, which have not been implemented since the study period, should be prioritised in Italy.
Aelbrecht, Karolien; De Maesschalck, Stéphanie; Willems, Sara; Deveugele, Myriam; Pype, Peter
The diversity in our society makes patient-centered care more difficult. In this study, we aim to describe how family physicians respond to unpleasant emotions of ethnic minority patients. One hundred ninety one consultations of family physicians with ethnic minority patients were video-recorded and analyzed using the Verona Codes for Provider Responses (VR-CoDES-P) to describe physicians' responses to patients' expressed unpleasant emotions or cues (implicit) and concerns (explicit). 42.4% (n=81) of all the consultations contained no cues or concerns, and thus no physician responses. Of the consultations containing at least one cue or concern, a mean of 3.45 cues and a mean of 1.82 concerns per consultation were found. Physicians are significantly (p≤0.001) more frequently stimulating further disclosure of patients' cues and concerns (providing space: n=339/494 or 68.6% versus reducing space: n=155/494 or 31.4%). However, these explorations are more often about the factual, medical content of the cue than about the emotion itself (n=110/494 or 22.3% versus n=79/494 or 16%). The inter-physician variation in response to patients' cues is larger than the variation in response to the patient's concerns. Although family physicians are quite often providing room for patients' emotions, there is much room for improvement when it comes to explicitly talking about emotional issues with patients. Further research should focus on a more qualitative in-depth analysis of the complex interplay between culture and language of ethnic minority patients in primary care and, consequently, create awareness among these healthcare providers about the importance of ethnic minority patients' emotions and how to respond accordingly. Copyright © 2017 Elsevier B.V. All rights reserved.
Bishop, Lisa; Young, Stephanie; Twells, Laurie; Dillon, Carla; Hawboldt, John
A pharmacist managed anticoagulation service was initiated in a multi-physician family medicine clinic in December 2006. In order to determine the patient and physician satisfaction with the service, a study was designed to describe the patients' satisfaction with the warfarin education and management they received from the pharmacist, and to describe the physicians' satisfaction with the level of care provided by the pharmacist for patients taking warfarin. A self-administered survey was completed by both eligible patients receiving warfarin and physicians prescribing warfarin between December 2006 and May 2008. The patient survey collected information on patient demographics, satisfaction with warfarin education and daily warfarin management. The physician survey collected data about the satisfaction with patient education and daily anticoagulation management by the pharmacist. Seventy-six of 94 (81%) patients completed the survey. Fifty-nine percent were male with a mean age of 65 years (range 24-90). Ninety-six percent agreed/strongly agreed the pharmacist did a good job teaching the importance of warfarin adherence, the necessity of INR testing and the risks of bleeding. Eighty-five percent agreed/strongly agreed the risk of blood clots was well explained, 79% felt the pharmacist did a good job teaching about dietary considerations and 77% agreed/strongly agreed the pharmacist explained when to see a doctor. All patients felt the pharmacist gave clear instructions on warfarin dosing and INR testing. Four of nine physicians (44%) completed the survey. All agreed/strongly agreed the pharmacist was competent in the care provided, were confident in the care their patients received, would like the pharmacist to continue the service, and would recommend this program to other clinics. Patients and family physicians were satisfied with the pharmacist managed anticoagulation program and recommended continuation of the program. These results support the role of the
Collado, Antonio; Gomez, Emili; Coscolla, Rosa; Sunyol, Ruth; Solé, Emília; Rivera, Javier; Altarriba, Emília; Carbonell, Jordi; Castells, Xavier
Fibromyalgia (FM) is a condition characterized by widespread pain, estimated to affect 2.4% of the Spanish population. Nowadays, there are no consistent epidemiological studies on the actual impact of the disease on work and family of these patients in a representative manner; therefore, the purpose of the study is to analyze the impact on family, employment and social environment in a representative sample of patients with FM attending Primary Public Care Centers in Spain. We carried out an epidemiological study, with a probability sampling procedure, stratified, relative to the municipality size and the number of health centres, seeking territorial representation. The survey was conducted using a self-administered structured questionnaire. A sample of 325 patients with FM was studied in 35 Primary Health Care Centers (PHCCs). The sample is composed of 96.6% of women, 51.9 (8) years of mean (standard deviation- sd) age. Ninety-three percent of the patients have worked throughout their life. Mean (sd) age onset of symptoms was 37 (11) years and diagnosis of FM was established 6.6 (8) years later. Family Environment: Fifty-nine percent of patients have difficulties with their partner. Forty-four percent of the patients report to be fairly or totally dependent on a family member in household chores. The household income decreased a mean (sd) of 708 (504) Euros/month in 65% of the patients. In 81% of the patients, there was an increase in extra expenses related to the disease with a mean (sd) of 230 (192) Euros/month. Working environment: At the moment of the study, 45% of the patients had work activity (34% were working and 11% were at sick leave), 13% were unemployed seeking job and 42% were not in the labor force. Twenty-three percent of patients had some degree of permanent work disability pension. Social Environment: The degree of satisfaction with health care professionals was low and twenty-six percent of the patients were members of specific patients
Nieuwenhuis, Marry H.; de Vos Tot Nederveen Cappel, Wouter; Botma, Akke; Nagengast, Fokko M.; Kleibeuker, Jan H.; Mathus-Vliegen, Elisabeth M. H.; Dekker, Evelien; Dees, Jan; Wijnen, Juul; Vasen, Hans F. A.
BACKGROUND & AIMS: Desmoid tumors are a severe extracolonic manifestation in familial adenomatous polyposis (FAP). Identification of risk factors might be helpful in the management of FAP patients with such tumors. The aim of this study was to assess potential risk factors for the development of
HIV-positive patients' and their families' comprehension of HIV- and AIDS-related information. ... perceived that pre- and post-counselling provided an opportunity for information sharing, but that they need health care workers to spend more time with them, to be non-judgemental and to make more use of visual aids.
Houtzager, Bregje A.; Oort, Frans J.; Hoekstra-Weebers, Josette E. H. M.; Caron, Huib N.; Grootenhuis, Martha A.; Last, Bob F.
Objective To assess associations of coping and family functioning with psychosocial adjustment in siblings of pediatric cancer patients at 1, 6, 12, and 24 months after diagnosis. Methods Eighty-three siblings (ages 7-19 years) participated. Effects on anxiety, quality of life, behavioral-emotional
Sami Ayed Alshammary
Conclusion: Physicians face a dilemma when families do not wish the patient to know about the cancer diagnosis, and this highlights the necessity of taking into consideration the social circumstances in healthcare. When taking these into consideration, curriculum in the medical school must, therefore, be updated and must integrate the acquisition of skills in breaking bad news early in training.
Berends, MJW; Kleibeuker, JH; de Vries, EGE; Mourits, MJE; Hollema, H; Pras, E; van der Zee, AGJ
Endometrial cancer occurs primarily in postmenopausal women older than 60 years of age. Especially in young patients with endometrial cancer, a positive family history with respect to cancer and/or development of synchronous or metachronous tumors can be indicative of hereditary factors. One generic
De Souza, Lorraine; Frank, Andrew Oliver
The emotional distress caused by pain is one of the most disruptive aspects of living with the condition. This study investigates how individuals experience pain and its consequences for family life and work. Unstructured interviews, using the 'Framework' approach with topic guide, were recorded and transcribed. Patients were sampled for age, sex, ethnicity and occupation from new referrals with spinal pain (SP) to a rheumatology outpatient clinic. Eleven patients (five males and six females) were interviewed in English (n = 9) or their preferred language (n = 2). Interviews were read in depth twice to identify the topics. Data were extracted in phrases and sentences using thematic content analysis. Emergent themes reported were relationships with: spouses and partners (n = 7), children/parents (n = 6), with other family and friends (n = 7) and work-related issues (n = 11). Patients valued support from family but expressed concerns about causing them worry. Work-related issues included physical and emotional efforts to keep working when in pain, fear of losing employment and financial problems. Patients expressed anxiety about how their pain affected other family members, regret at losing full work capacity and worry about financial consequences. The lived experience of chronic SP has ramifications that go beyond the individual, reaching into work and social relationships.
Zendedel, R.; Schouten, B.C.; van Weert, J.C.M.; van den Putte, B.
Objective To explore differences in perspectives of general practitioners, Turkish-Dutch migrant patients and family interpreters on interpreters’ role, power dynamics and trust in interpreted GP consultations. Methods 54 semi-structured in-depth interviews were conducted with the three parties
Knibbe, Mare; Maeckelberghe, Els; Verkerk, Marian; Weimar, W; Bos, MA; Busschbach, JJ
The family of a child in need of a transplant has a double role. It has a role of patient on the one hand, receiving professional care, and of caregiver on the other hand, sharing responsibility with the medical caregivers. In order to reflect on the complex intertwining of responsibilities
Warmenhoven, F.C.; Rijswijk, H.C.A.M. van; Hoogstraten, E. van; Spaendonck, K.P.M. van; Lucassen, P.L.B.J.; Prins, J.B.; Vissers, K.; Weel, C. van
PURPOSE Depression is highly prevalent in palliative care patients. In clinical practice, there is concern about both insufficient and excessive diagnosis and treatment of depression. In the Netherlands, family physicians have a central role in delivering palliative care. We explored variation in
Nieuwenhuis, M.H.; Vos to Nederveen Cappel, de W.; Botma, A.; Nagengast, F.M.; Kleibeuker, J.H.; Mathus-Vliegen, E.M.; Dekker, E.; Dees, J.; Wijnen, J.; Vasen, H.F.
Background & Aims: Desmoid tumors are a severe extracolonic manifestation in familial adenomatous polyposis (FAP). Identification of risk factors might be helpful in the management of FAP patients with such tumors. The aim of this study was to assess potential risk factors for the development of
Gong, Zhuwen; Yu, Yongguo; Zhang, Qigang; Gu, Xuefan
To provide prenatal diagnosis for a pregnant woman who had given birth to a child with Fanconi anemia with combined next-generation sequencing (NGS) and Sanger sequencing. For the affected child, potential mutations of the FANCA gene were analyzed with NGS. Suspected mutation was verified with Sanger sequencing. For prenatal diagnosis, genomic DNA was extracted from cultured fetal amniotic fluid cells and subjected to analysis of the same mutations. A low-frequency frameshifting mutation c.989_995del7 (p.H330LfsX2, inherited from his father) and a truncating mutation c.3971C>T (p.P1324L, inherited from his mother) have been identified in the affected child and considered to be pathogenic. The two mutations were subsequently verified by Sanger sequencing. Upon prenatal diagnosis, the fetus was found to carry two mutations. The combined next-generation sequencing and Sanger sequencing can reduce the time for diagnosis and identify subtypes of Fanconi anemia and the mutational sites, which has enabled reliable prenatal diagnosis of this disease.
Full Text Available This article tackles the question of how, on the one hand, the high life expectancy and, on the other, the increasing age of mothers at childbirth will impact the joint lifetime of three and four generations and will develop in future. To this end, indicators are derived from the official data on mortality and fertility for the mean joint lifetimes of three- and four-generation families. Because of the complicated data available, the investigation will be restricted to the female succession of generations, and here to an observation of the first-born child in each case. The indicators act as model calculations, which is why they serve above all to indicate (future developments in mean joint lifetimes. The indicators are calculated for the average jointly-spent lifetime of three-generation families for the period from 1990 to 2060, and of four-generation families for the period from 2010 to 2060. The result of the calculations for Western Germany show an increase in the jointly-spent lifetime of three generations of up to roughly 35 years in 2000, after which that the figure falls continually to a value of roughly 30 years. A similarly developing trend emerges for four generations, but this is delayed by roughly 30 years towards the future, and reaches the highest value around 2030 to 2040, at roughly seven to ten years. For Eastern Germany, with its even younger age of women at childbirth in both the past and in the present, the maximum jointly-spent life years of three generations at the beginning of the observation period (roughly around 1990 is almost 40 years, after which this indicator falls continuously. The indicator of the average jointly-spent years of four-generation families, by contrast, probably reaches a maximum around 2020, with a value of 12 to 14 years. Also after this, one may anticipate a reduction in the joint lifetimes of four-generation families in Eastern Germany. All in all, the trends of the indicators denote that one
Ehsani, Maryam; T