Congenital vertical talus in four generations of the same family

Energy Technology Data Exchange (ETDEWEB)

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)

2004-11-01

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.)

Patient/Family Education for Newly Diagnosed Pediatric Oncology Patients.

Science.gov (United States)

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.

Family functioning in families of first-episode psychosis patients as compared to chronic mentally ill patients and healthy controls.

Science.gov (United States)

Koutra, Katerina; Triliva, Sofia; Roumeliotaki, Theano; Stefanakis, Zacharias; Basta, Maria; Lionis, Christos; Vgontzas, Alexandros N

2014-11-30

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.

FAMILIAL AMYLOID POLYNEUROPATHY——CLINICAL REPORT OF A FAMILY

Institute of Scientific and Technical Information of China (English)

李延峰; 郭玉璞; 池田修一; 方定华

1996-01-01

This paper reports a familial amyloid polyneumpathy (FAP) family in China. This family being investigated had 69 members of five generations. From the third generation, there have been 16 patients. The age of onset was about 3 to 5 decades. The initial symptoms were autonomic nerve symptcans, such as impotence, dyspepaia and diarrhoea, associated with the sensory loss of lower extremities. As the disease progressed. the upper extremities and motor ability were also involved. The duration of disease course wasabout 8-10 years, most patients died of infection and cacbexia. Sural biopsy in 3 patients had showed positive Congo red staining. From the clinical view, this FAP family is similar to FAP I found in Japan. Thetrue classification, however, should be confirmed by further genetic analysis.

Patient-centered family meetings in palliative care: a quality improvement project to explore a new model of family meetings with patients and families at the end of life.

Science.gov (United States)

Sanderson, Christine R; Cahill, Philippa J; Phillips, Jane L; Johnson, Anne; Lobb, Elizabeth A

2017-12-01

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.

Developing A Family-Size Biogas-Fueled Electricity Generating System

Directory of Open Access Journals (Sweden)

Agus Haryanto

2017-06-01

 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

FAMILY PRACTICE APPROACH TO ELDERLY PATIENTS

Directory of Open Access Journals (Sweden)

Marija Petek Šter

2004-10-01

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.

Degenerative pontine lesions in patients with familial narcolepsy.

Science.gov (United States)

Stepień, Adam; Staszewski, Jacek; Domzał, Teofan M; Tomczykiewicz, Kazimierz; Skrobowska, Ewa; Durka-Kesy, Marta

2010-01-01

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.

Three-Generation Family Households: Differences by Family Structure at Birth

Science.gov (United States)

Pilkauskas, Natasha V.

2012-01-01

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…

Patient and family involvement in contemporary health care.

Science.gov (United States)

Angood, Peter; Dingman, Jennifer; Foley, Mary E; Ford, Dan; Martins, Becky; O'Regan, Patti; Salamendra, Arlene; Sheridan, Sue; Denham, Charles R

2010-03-01

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.

Banking on Families: How Families Generate and Distribute Social Capital

Science.gov (United States)

Furstenberg, Frank F.

2005-01-01

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…

Family, Socialization and Migration in Norwegian-Pakistani Families: A Study of the First and the Second Generation

OpenAIRE

Shakari, Yasmine

2013-01-01

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...

Pattern of family history in stone patients.

Science.gov (United States)

Marickar, Y M Fazil; Salim, Abiya; Vijay, Adarsh

2009-12-01

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

Research on a family of n-scroll chaos generators

International Nuclear Information System (INIS)

Zhang, G; Yang, S-Z; He, L-F

2008-01-01

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

Researching Reflexively With Patients and Families: Two Studies Using Video-Reflexive Ethnography to Collaborate With Patients and Families in Patient Safety Research.

Science.gov (United States)

Collier, Aileen; Wyer, Mary

2016-06-01

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.

A model of adaptation for families of elderly patients with dementia: focusing on family resilience.

Science.gov (United States)

Kim, Geun Myun; Lim, Ji Young; Kim, Eun Joo; Kim, Sang Suk

2017-07-19

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.

Next-generation sequencing reveals a novel NDP gene mutation in a Chinese family with Norrie disease.

Science.gov (United States)

Huang, Xiaoyan; Tian, Mao; Li, Jiankang; Cui, Ling; Li, Min; Zhang, Jianguo

2017-11-01

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.

Next-generation sequencing reveals a novel NDP gene mutation in a Chinese family with Norrie disease

Directory of Open Access Journals (Sweden)

Xiaoyan Huang

2017-01-01

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.

Family Relationships and Psychosocial Dysfunction Among Family Caregivers of Patients With Advanced Cancer.

Science.gov (United States)

Nissen, Kathrine G; Trevino, Kelly; Lange, Theis; Prigerson, Holly G

2016-12-01

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.

Family History in Young Patients With Stroke.

Science.gov (United States)

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

2015-07-01

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.

The assessment of the family vision generation process in small and ...

African Journals Online (AJOL)

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 ...

Family History in Patients with Bipolar Disorder.

Science.gov (United States)

Özdemir, Osman; Coşkun, Salih; Aktan Mutlu, Elif; Özdemir, Pınar Güzel; Atli, Abdullah; Yilmaz, Ekrem; Keskin, Sıddık

2016-09-01

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.

Evaluation Of The Overload Of Care In Families Of Psychiatric Patients In Psychosocial Care Center

Directory of Open Access Journals (Sweden)

Mayron Morais Almeida

2017-07-01

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.

Intergenerational Learning (Between Generation X & Y) in Learning Families: A Narrative Inquiry

Science.gov (United States)

Ho, C. Y. Cherri

2010-01-01

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…

Home Language Policy of Second-Generation Turkish Families in the Netherlands

Science.gov (United States)

Bezcioglu-Goktolga, Irem; Yagmur, Kutlay

2018-01-01

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…

Next-generation sequencing reveals a novel NDP gene mutation in a Chinese family with Norrie disease

OpenAIRE

Huang, Xiaoyan; Tian, Mao; Li, Jiankang; Cui, Ling; Li, Min; Zhang, Jianguo

2017-01-01

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...

Sustainability in the family home – which generation is leading the way?

DEFF Research Database (Denmark)

Grønhøj, Alice

2014-01-01

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...

The Generational Change in Family Businesses: Comparative Analysis between Italy and Peru

Directory of Open Access Journals (Sweden)

César Cáceres Dagnino

2017-07-01

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.

Psychoeducation Interventions in Families of Patients with Schizophrenia

Directory of Open Access Journals (Sweden)

Filipe Reis

2014-10-01

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.

Illnesses in siblings of US patients with bipolar disorder relate to multigenerational family history and patients severity of illness.

Science.gov (United States)

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

2017-01-01

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.

The importance of family factors and generation status: mental health service use among Latino and Asian Americans.

Science.gov (United States)

Chang, Janet; Natsuaki, Misaki N; Chen, Chih-Nan

2013-07-01

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.

Family Relationships and Psychosocial Dysfunction among Family Caregivers of Patients with Advanced Cancer

DEFF Research Database (Denmark)

Nissen, Kathrine Grovn; Trevino, Kelly; Lange, Theis

2016-01-01

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...

Limited phenotypic variation of hypocalcified amelogenesis imperfecta in a Danish five-generation family with a novel FAM83H nonsense mutation.

Science.gov (United States)

Haubek, Dorte; Gjørup, Hans; Jensen, Lillian G; Juncker, Inger; Nyegaard, Mette; Børglum, Anders D; Poulsen, Sven; Hertz, Jens M

2011-11-01

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.

Family correlates of depression among hiv positive patients ...

African Journals Online (AJOL)

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 ...

A study of the stressor, family environment and family burden in dissociative (conversion disorder patients

Directory of Open Access Journals (Sweden)

Kamal K Verma

2017-01-01

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.

Dealing with symptoms and issues of hospitalized patients with cancer in indonesia: the role of families, nurses, and physicians.

Science.gov (United States)

Effendy, Christantie; Vissers, Kris; Tejawinata, Sunaryadi; Vernooij-Dassen, Myrra; Engels, Yvonne

2015-06-01

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.

East Indian Families Raising ABCD Adolescents: Cultural and Generational Challenges

Science.gov (United States)

Poulsen, Shruti S.

2009-01-01

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…

Patient and family member perspectives on searching for cancer clinical trials: A qualitative interview study.

Science.gov (United States)

Ridgeway, Jennifer L; Asiedu, Gladys B; Carroll, Katherine; Tenney, Meaghan; Jatoi, Aminah; Radecki Breitkopf, Carmen

2017-02-01

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.

Patient and family members perspectives on radioactive iodine treatment

Energy Technology Data Exchange (ETDEWEB)

McGrath, P.; Fitch, M.I. [Toronto-Sunnybrook Regional Cancer Centre, Toronto, Ontario (Canada)

1999-08-01

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)

Patient and family members perspectives on radioactive iodine treatment

International Nuclear Information System (INIS)

McGrath, P.; Fitch, M.I.

1999-08-01

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)

A study of family health in Chareidi second and third generation survivors of the Holocaust.

Science.gov (United States)

Yaroslawitz, S L; DeGrace, B W; Sloop, J; Arnold, S; Hamilton, T B

2015-01-01

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.

MRI of a family with focal abnormalities of gyration

International Nuclear Information System (INIS)

Muntaner, L.; Perez-Ferron, J.J.; Herrera, M.; Rosell, J.; Taboada, D.; Climent, S.

1997-01-01

Focal abnormalities of gyration (FAG) are developmental disorders that may occur in isolated patients or, as in the case being reported, as part of a familial disorder. Analysis of individuals in a family spanning three generations was carried out using MRI. Abnormalities, present in all members of generations II and III, included focal cortical dysplasia (three patients), focal cortical infolding (two patients) and schizencephaly (one patient); associated minor anomalies, such as white matter abnormalities, were seen in the remaining three members of generations II and III. MRI recognition of FAG in the family being reported proved useful in defining their phenotypical expression and providing proper counselling for individual family members. (orig.). With 6 figs

Patients' and family members' views on patient-centered communication during cancer care.

Science.gov (United States)

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

2013-11-01

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.

Expressions of Generativity through Family Leisure: Experiences of Grandparents and Adult Grandchildren

Science.gov (United States)

Hebblethwaite, Shannon; Norris, Joan

2011-01-01

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…

Attitudes Toward Family Involvement in Cancer Treatment Decision Making: The Perspectives of Patients, Family Caregivers, and Their Oncologists.

Science.gov (United States)

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

2017-06-01

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.

Family functioning and perceived support from nurses during cancer treatment among Danish and Australian patients and their families.

Science.gov (United States)

Dieperink, Karin B; Coyne, Elisabeth; Creedy, Debra K; Østergaard, Birte

2018-01-01

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.

Familial cleidocranial dysplasia misdiagnosed as rickets over three generations.

Science.gov (United States)

Franceschi, Roberto; Maines, Evelina; Fedrizzi, Michela; Piemontese, Maria Rosaria; De Bonis, Patrizia; Agarwal, Nivedita; Bellizzi, Maria; Di Palma, Annunziata

2015-10-01

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.

Creating Opportunity for Families: A Two-Generation Approach. KIDS COUNT Policy Report

Science.gov (United States)

Gencer, Arin

2014-01-01

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…

Pseudohypoparathyroidism (a report of 6 patients in a family)

International Nuclear Information System (INIS)

Li Rungen; Jiao Xinqiang; Chen Zhilie; Lu Jun; Gao Xin

2001-01-01

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

Family entrepreneurship in the Czech Republic on the verge of first generation handover

Directory of Open Access Journals (Sweden)

Naděžda Petrů

2017-12-01

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.

Familial LCAT deficiency. Report of two patients from a Canadian family of Italian and Swedish descent.

Science.gov (United States)

Frohlich, J; Godolphin, W J; Reeve, C E; Evelyn, K A

1978-01-01

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.

Unfinished Business in Families of Terminally Ill With Cancer Patients.

Science.gov (United States)

Yamashita, Ryoko; Arao, Harue; Takao, Ayumi; Masutani, Eiko; Morita, Tatsuya; Shima, Yasuo; Kizawa, Yoshiyuki; Tsuneto, Satoru; Aoyama, Maho; Miyashita, Mitsunori

2017-12-01

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.

Cervical dystonia: about familial and sporadic cases in 88 patients

Directory of Open Access Journals (Sweden)

Carlos Henrique F. Camargo

2014-02-01

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.

Aging Families and Breast Cancer: Multi-generational Issues

National Research Council Canada - National Science Library

Raveis, Victoria

2002-01-01

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...

Generation und Familie – über die Ambivalenz eines multistrukturellen Verhältnisses Generation and Family—On the Ambivalence of Multi-Structural Relationships

Directory of Open Access Journals (Sweden)

Vera Bollmann

2008-07-01

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.”

The process of death imminence awareness by family members of patients in adult critical care.

Science.gov (United States)

Baumhover, Nancy C

2015-01-01

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.

Pattern self-repetition of fingerprints, lip prints, and palatal rugae among three generations of family: A forensic approach to identify family hierarchy.

Science.gov (United States)

Mala, Sankeerti; Rathod, Vanita; Pundir, Siddharth; Dixit, Sudhanshu

2017-01-01

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.

Generating families in the restricted three-body problem

CERN Document Server

Hénon, Michel

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.

Molecular Subtyping of Tumors from Patients with Familial Glioma.

Science.gov (United States)

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

2017-10-10

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: journals.permissions@oup.com

Family trauma through generations: incest and domestic violence in rural Sweden in the nineteenth century.

Science.gov (United States)

Drugge, Ulf

2008-10-01

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.

Prevalence and predictors of anxiety and depression among family caregivers of cancer patients: a nationwide survey of patient-family caregiver dyads in Korea.

Science.gov (United States)

Park, Boyoung; Kim, So Young; Shin, Ji-Yeon; Sanson-Fisher, Robert W; Shin, Dong Wook; Cho, Juhee; Park, Jong-Hyock

2013-10-01

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.

Developing a Family-Size Biogas-Fueled Electricity Generating System

OpenAIRE

Haryanto, Agus; Marotin, Fadli; Triyono, Sugeng; Hasanudin, Udin

2017-01-01

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. ...

Generation to Generation: The Heart of Family Medicine

Science.gov (United States)

Winter, Robin O.

2012-01-01

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…

FAMILY EDUCATION IN MANAGEMENT OF SCHIZOPHRENIC AND MOOD DISORDER PATIENTS

Directory of Open Access Journals (Sweden)

GH GHASEMI

2000-03-01

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.

Decision-making among patients and their family in ALS care: a review.

Science.gov (United States)

Foley, Geraldine; Hynes, Geralyn

2018-05-01

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.

Effective doses to family members of patients treated with radioiodine-131

International Nuclear Information System (INIS)

Kocovska, M Zdraveska; Vaskova, O; Majstorov, V; Kuzmanovska, S; Gjorceva, D Pop; Jokic, V Spasic

2011-01-01

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.

The Challenges, Emotions, Coping, and Gains of Family Caregivers Caring for Patients With Advanced Cancer in Singapore: A Qualitative Study.

Science.gov (United States)

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.

Relationships between children and their grandparents and importance of older generations in lives of todays'families

Directory of Open Access Journals (Sweden)

Stasova L.

2014-01-01

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.

Advance directives: cancer patients' preferences and family-based decision making.

Science.gov (United States)

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

2017-07-11

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.

Patients in a persistent vegetative state attitudes and reactions of family members.

Science.gov (United States)

Tresch, D D; Sims, F H; Duthie, E H; Goldstein, M D

1991-01-01

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)

Pros and cons of prognostic disclosure to Japanese cancer patients and their families from the family's point of view.

Science.gov (United States)

Yoshida, Saran; Shiozaki, Mariko; Sanjo, Makiko; Morita, Tatsuya; Hirai, Kei; Tsuneto, Satoru; Shima, Yasuo

2012-12-01

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.

Interrelationship between family history of alcoholism and generational status in the prediction of alcohol dependence in US Hispanics.

Science.gov (United States)

Chartier, K G; Thomas, N S; Kendler, K S

2017-01-01

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.

Family caregivers of patients with frontotemporal dementia: An integrative review.

Science.gov (United States)

Caceres, Billy A; Frank, Mayu O; Jun, Jin; Martelly, Melissa T; Sadarangani, Tina; de Sales, Paloma Cesar

2016-03-01

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

Intergenerational family solidarity: value differences between immigrant groups and generations

NARCIS (Netherlands)

Merz, Eva-Maria; Ozeke-Kocabas, Ezgi; Oort, Frans J.; Schuengel, Carlo

2009-01-01

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

Depression and family support in breast cancer patients

Directory of Open Access Journals (Sweden)

Su JA

2017-09-01

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

Condition Help: A Patient- and Family-Initiated Rapid Response System.

Science.gov (United States)

Eden, Elizabeth L; Rack, Laurie L; Chen, Ling-Wan; Bump, Gregory M

2017-03-01

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

Patient and family perceptions of physical therapy in the medical intensive care unit.

Science.gov (United States)

Sottile, Peter D; Nordon-Craft, Amy; Malone, Daniel; Schenkman, Margaret; Moss, Marc

2015-10-01

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.

Effective doses to family members of patients treated with radioiodine 131

International Nuclear Information System (INIS)

Kocovska, Marina Zdravevska; Ristevska, Svetlana Micevska; Nikolovski, Sasho; Jokic, Vesna Spasic

2010-01-01

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)

Dimensions of patient safety culture in family practice.

Science.gov (United States)

Palacios-Derflingher, Luz; O'Beirne, Maeve; Sterling, Pam; Zwicker, Karen; Harding, Brianne K; Casebeer, Ann

2010-01-01

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.

Iranian Family Representation from the Perspective of Gender and Generational Relationships in TV Commercials

Directory of Open Access Journals (Sweden)

Masoud Kousari

2016-03-01

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.

Parental Socioeconomic Status, Communication, and Children's Vocabulary Development: A Third-Generation Test of the Family Investment Model

Science.gov (United States)

Sohr-Preston, Sara L.; Scaramella, Laura V.; Martin, Monica J.; Neppl, Tricia K.; Ontai, Lenna; Conger, Rand

2013-01-01

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…

Patient and family involvement in decision making for management of cancer patients at a centre in Singapore.

Science.gov (United States)

Chong, Jia An; Quah, Yan Ling; Yang, Grace Meijuan; Menon, Sumytra; Radha Krishna, Lalit Kumar

2015-12-01

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/

Changes in family functions in patients with secondary premature ejaculation

Directory of Open Access Journals (Sweden)

Mustafa Arı

2011-06-01

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.

Exploring experience of family relations by patients with anorexia nervosa and bulimia nervosa using a projective family test.

Science.gov (United States)

Fäldt Ciccolo, Erica B

2008-08-01

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.

Mutation Detection in Patients with Retinal Dystrophies Using Targeted Next Generation Sequencing.

Directory of Open Access Journals (Sweden)

Nicole Weisschuh

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.

Assessment of dizziness among older patients at a family practice clinic: a chart audit study

Directory of Open Access Journals (Sweden)

Pimlott Nicholas JG

2005-01-01

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.

Routine HIV Testing of Family Members of Hospitalized Patients in Nigeria

Directory of Open Access Journals (Sweden)

Olusegun Busari

2012-04-01

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

Building blocks for successful patient and family advisory boards: collaboration, communication, and commitment.

Science.gov (United States)

Taloney, Linda; Flores, Gabriela

2013-01-01

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?"

Dental anomalies in pediatric patients with familial adenomatous polyposis.

Science.gov (United States)

Septer, Seth; Bohaty, Brenda; Onikul, Robin; Kumar, Vandana; Williams, Karen B; Attard, Thomas M; Friesen, Craig A; Friesen, Lynn Roosa

2018-04-01

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.

Assessing burden in families of critical care patients.

Science.gov (United States)

Kentish-Barnes, Nancy; Lemiale, Virginie; Chaize, Marine; Pochard, Frédéric; Azoulay, Elie

2009-10-01

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.

Determinants of patient-family caregiver congruence on preferred place of death in taiwan.

Science.gov (United States)

Tang, Siew Tzuh; Chen, Cheryl Chia-Hui; Tang, Woung-Ru; Liu, Tsang-Wu

2010-08-01

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.

Family functionality in pediatric asthma patients in a public hospital in Sonora, Mexico.

Directory of Open Access Journals (Sweden)

Gabriela Vázquez Armenta

2016-06-01

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.

Familial Risks of Kidney Failure in Sweden: A Nationwide Family Study

OpenAIRE

Akrawi, Delshad Saleh; Li, Xinjun; Sundquist, Jan; Sundquist, Kristina; Zöller, Bengt

2014-01-01

BACKGROUND: The value of family history as a risk factor for kidney failure has not been determined in a nationwide setting. AIM: This nationwide family study aimed to determine familial risks for kidney failure in Sweden. METHODS: The Swedish multi-generation register on 0-78-year-old subjects were linked to the Swedish patient register and the Cause of death register for 1987-2010. Individuals diagnosed with acute kidney failure (n = 10063), chronic kidney failure (n = 18668), or unspecifie...

"There is still so much ahead of us"-family functioning in families of palliative cancer patients.

Science.gov (United States)

Kühne, Franziska; Krattenmacher, Thomas; Bergelt, Corinna; Beierlein, Volker; Herzog, Wolfgang; V Klitzing, Kai; Weschenfelder-Stachwitz, Heike; Romer, Georg; Möller, Birgit

2013-06-01

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.

Doctor-patient communication without family is most frequently practiced in patients with malignant tumors in home medical care settings.

Science.gov (United States)

Kimura, Takuma; Imanaga, Teruhiko; Matsuzaki, Makoto

2014-01-01

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.

Patient and family/friend satisfaction in a sample of Jordanian Critical Care Units.

Science.gov (United States)

Mosleh, S; Alja'afreh, M; Lee, A J

2015-12-01

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.

Predictors of caregiver burden in Iranian family caregivers of cancer patients.

Science.gov (United States)

Mirsoleymani, Seyed Reza; Rohani, Camelia; Matbouei, Mahsa; Nasiri, Malihe; Vasli, Parvaneh

2017-01-01

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.

Development and Validation of Quality Criteria for Providing Patient- and Family-centered Injury Care.

Science.gov (United States)

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

2017-08-01

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.

Migrations, families, generations: Language transmission among several Italian communities in England

Directory of Open Access Journals (Sweden)

Margherita Di Salvo

2015-06-01

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.

Emotions, Ideas and Experiences of Caregivers of Patients With Schizophrenia About "Family to Family Support Program".

Science.gov (United States)

Bademli, Kerime; Duman, Zekiye Çetinkaya

2016-06-01

"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.

Family presence during resuscitation: A descriptive study with Iranian nurses and patients' family members.

Science.gov (United States)

Zali, Mahnaz; Hassankhani, Hadi; Powers, Kelly A; Dadashzadeh, Abbas; Rajaei Ghafouri, Rouzbeh

2017-09-01

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.

R.E.A.C.H. to Teach: Making Patient and Family Education "Stick".

Science.gov (United States)

Cutilli, Carolyn Crane

2016-01-01

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.

Stuttering Attitudes among Turkish Family Generations and Neighbors from Representative Samples

Science.gov (United States)

Ozdemir, R. Sertan; St. Louis, Kenneth O.; Topbas, Seyhun

2011-01-01

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…

Attitudes of Slovenian family practice patients toward changing unhealthy lifestyle and the role of family physicians: a cross-sectional study

Science.gov (United States)

Klemenc-Ketis, Zalika; Bulc, Mateja; Kersnik, Janko

2011-01-01

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

Cognitive, Personality, and Family Factors in Patients with Migraine Headache

OpenAIRE

Reza Johari-Fard; Farzad Goli; Amirreza Boroumand

2014-01-01

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 ...

Rate of Family Violence Among Patients With Schizophrenia in Japan.

Science.gov (United States)

Kageyama, Masako; Yokoyama, Keiko; Nagata, Satoko; Kita, Sachiko; Nakamura, Yukako; Kobayashi, Sayaka; Solomon, Phyllis

2015-09-01

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.

Familial Idiopathic Cranial Neuropathy in a Chinese Family.

Science.gov (United States)

Zhang, Li; Liang, Jianfeng; Yu, Yanbing

Cranial neuropathy is usually idiopathic and familial cases are uncommon. We describe a family with 5 members with cranial neuropathy over 3 generations. All affected patients were women, indicating an X-linked dominant or an autosomal dominant mode of inheritance. Our cases and a review of the literature suggest that familial idiopathic cranial neuropathy is a rare condition which may be related to autosomal dominant vascular disorders (e.g. vascular tortuosity, sclerosis, elongation or extension), small posterior cranial fossas, anatomical variations of the posterior circulation, hypersensitivity of cranial nerves and other abnormalities. Moreover, microvascular decompression is the treatment of choice because vascular compression is the main factor in the pathogenesis. To the best of our knowledge, this is the first report of familial cranial neuropathy in China.

Family functioning in patients with obsessive compulsive disorder: A case - control study

Directory of Open Access Journals (Sweden)

Sateesh R Koujalgi

2015-01-01

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.

Depression in the Family of Patients With Dementia in Korea.

Science.gov (United States)

Jang, Sung-In; Bae, Hong-Chul; Shin, Jaeyong; Jang, Suk-Yong; Hong, Seri; Han, Kyu-Tae; Park, Eun-Cheol

2016-09-01

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.

[The Quality of the Family Physician-Patient Relationship. Patient-Related Predictors in a Sample Representative for the German Population].

Science.gov (United States)

Dinkel, Andreas; Schneider, Antonius; Schmutzer, Gabriele; Brähler, Elmar; Henningsen, Peter; Häuser, Winfried

2016-03-01

Patient-centeredness and a strong working alliance are core elements of family medicine. Surveys in Germany showed that most people are satisfied with the quality of the family physician-patient relationship. However, factors that are responsible for the quality of the family physician-patient relationship remain unclear. This study aimed at identifying patient-related predictors of the quality of this relationship. Participants of a cross-sectional survey representative for the general German population were assessed using standardized questionnaires. The perceived quality of the family physician-patient relationship was measured with the German version of the Patient-Doctor Relationship Questionnaire (PDRQ-9). Associations of demographic and clinical variables (comorbidity, somatic symptom burden, psychological distress) with the quality of the family physician-patient relationship were assessed by applying hierarchical linear regression. 2278 participants (91,9%) reported having a family physician. The mean total score of the PDRQ-9 was high (M=4,12, SD=0,70). The final regression model showed that higher age, being female, and most notably less somatic and less depressive symptoms predicted a higher quality of the family physician-patient relationship. Comorbidity lost significance when somatic symptom burden was added to the regression model. The final model explained 11% of the variance, indicating a small effect. Experiencing somatic and depressive symptoms emerged as most relevant patient-related predictors of the quality of the family physician-patient relationship. © Georg Thieme Verlag KG Stuttgart · New York.

Internalized Stigma and Perceived Family Support in Acute Psychiatric In-Patient Units.

Science.gov (United States)

Korkmaz, Gülçin; Küçük, Leyla

2016-02-01

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.

CLINICAL AND FAMILY PROFILE OF PATIENTS DIAGNOSED WITH KERATOCONUS

Directory of Open Access Journals (Sweden)

Kalpana

2015-03-01

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

Aspects of family caregiving as addressed in planned discussions between nurses, patients with chronic diseases and family caregivers: a qualitative content analysis.

Science.gov (United States)

Hagedoorn, E I; Paans, W; Jaarsma, T; Keers, J C; van der Schans, C; Luttik, M Louise

2017-01-01

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

Exome sequencing in a family segregating for celiac disease

NARCIS (Netherlands)

Szperl, A M; Ricaño-Ponce, I; Li, J K; Deelen, P; Kanterakis, A; Plagnol, V; van Dijk, Freerk; Westra, H J; Trynka, G; Mulder, C. J.; Swertz, M; Wijmenga, Cisca; Zheng, H C H

Celiac disease is a multifactorial disorder caused by an unknown number of genetic factors interacting with an environmental factor. Hence, most patients are singletons and large families segregating with celiac disease are rare. We report on a three-generation family with six patients in which the

Patient/Family Education for Newly Diagnosed Pediatric Oncology Patients: Consensus Recommendations from a Children’s Oncology Group Expert Panel

Science.gov (United States)

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

2016-01-01

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. PMID:27385664

When Patients Divorce: The Family Physician's Legal Position

OpenAIRE

Mesbur, Ruth E.

1983-01-01

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...

The prognostic value of family history among patients with urinary bladder cancer.

Science.gov (United States)

Egbers, Lieke; Grotenhuis, Anne J; Aben, Katja K; Alfred Witjes, J; Kiemeney, Lambertus A; Vermeulen, Sita H

2015-03-01

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.

Relationship between family meal frequency and individual dietary intake among diabetic patients.

Science.gov (United States)

Ruhee, Divya; Mahomoodally, Fawzi

2015-01-01

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

Family relations, mental health and adherence to nutritional guidelines in patients facing dialysis initiation.

Science.gov (United States)

Untas, Aurélie; Rascle, Nicole; Idier, Laetitia; Lasseur, Catherine; Combe, Christian

2012-01-01

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.

COPING SKILLS OF IRANIAN FAMILY CAREGIVERS' IN CARETAKING OF PATIENTS UNDERGOING HAEMODIALYSIS: A QUALITATIVE STUDY.

Science.gov (United States)

Eslami, Ahmad Ali; Rabiei, Leili; Abedi, Heidar Ali; Shirani, Majid; Masoudi, Reza

2016-09-01

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.

Patients' family satisfaction with needs met at the medical intensive care unit.

Science.gov (United States)

Khalaila, Rabia

2013-05-01

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.

Typology of perceived family functioning in an American sample of patients with advanced cancer.

Science.gov (United States)

Schuler, Tammy A; Zaider, Talia I; Li, Yuelin; Hichenberg, Shira; Masterson, Melissa; Kissane, David W

2014-08-01

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.

Coping Strategies of Family Members of Hospitalized Psychiatric Patients

Directory of Open Access Journals (Sweden)

Phyllis M. Eaton

2011-01-01

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.

Lumbar spondylolysis: A report of four cases from two generations of a family

OpenAIRE

Yurube, Takashi; Kakutani, Kenichiro; Okamoto, Koji; Manabe, Michihiko; Maeno, Koichiro; Yoshikawa, Masaho; Sha, Norihide; Kuroda, Ryosuke; Nishida, Kotaro

2017-01-01

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...

The role of family nutritional support in Japanese patients with type 2 diabetes mellitus.

Science.gov (United States)

Watanabe, Koin; Kurose, Takeshi; Kitatani, Naomi; Yabe, Daisuke; Hishizawa, Masahiro; Hyo, Takanori; Seino, Yutaka

2010-01-01

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.

Perspectives of Korean Patients, Families, Physicians and Nurses on Advance Directives

Directory of Open Access Journals (Sweden)

Jia Lee, PhD, RN

2010-12-01

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.

FAMILY BEHAVIOR IN MAINTENANCE STATUS HB CHRONIC RENAL FAILURE PATIENTS THROUGH FAMILY CENTERED CARE APPROACH OF DIET FE MANAGEMENT

Directory of Open Access Journals (Sweden)

Anggia Fajar Hardianti

2017-04-01

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.

Radiological evaluation of familial osteopetrosis

International Nuclear Information System (INIS)

Moon, Moo Chang; Kang, Shin Wha; Won, Jong Jin; Rhee, Song Joo; Choi, Ki Chul

1980-01-01

Authors found 16 patients with benign osteopetrosis out of 62 members of 4 families and analysed these patients clinically, radiologically, hematologically and biochemically at the Department of Radiology, Jeonbug National University Hospital from October 1977 to June 1980. The results are as follows; 1. We obtained that there is evidence of familial tendency in developing osteopetrosis because of the fact that 15 patients (94%) developed in 3 families and more than 2 patients in each family. In genetical point of view we suspected dominant trait of inheritance and could rule out recessive trait because patients were found in successive generations except for one family. There were no consangulneous marriages among the parents of these patients. 2. The majority of patients were adolescent or adult above 10 years of age when the disease was diagnosed. The incidence was identical in both sex. 3. No clinical symptoms and historical abnormalities were found in 11 patients (69%) and 5 patients (31%) showed only mild symptoms. Among 5 patients with clinical symptoms 3 patients showed pathologic fractures. In all 3 patients, fractures occurred only by mild trauma and affected sites were tubular bones and they were transverse type. 4. There were no specific relationship between ABO types and Rh reactions in developing osteopetrosis and no specific findings in hematological, biochemical and routine urinalysis. 5. The only diagnostic finding in most patients were the typical and specific radiological findings

Pivotal role of families in doctor-patient communication in oncology: a qualitative study of patients, their relatives and cancer clinicians.

Science.gov (United States)

Datta, S S; Tripathi, L; Varghese, R; Logan, J; Gessler, S; Chatterjee, S; Bhaumik, J; Menon, U

2017-09-01

Families are a unique source of support for many cancer patients. Most advanced communication skills training for oncologists are patient centred and do not cover interactions with family members. The current study used in-depth qualitative interviews of patients, relatives and cancer clinicians with thematic analysis to explore the role of family members in the communication process. Forty-one participants included 10 cancer patients, 10 relatives ensuring proportionate representation of both gender and primary cancer site and 21 doctors representing both medical and surgical oncology. Nineteen of 20 patients and relatives wanted an "open and honest" discussion with their doctors. All patients, relatives and doctors preferred involvement of the family at most stages of cancer treatment. Five themes were identified in relation to communication with family members. The participants highlighted the "importance of family for physical and psychological care," they emphasised the need to "balance patient autonomy and relatives desire to be protective" using varied "negotiating strategies" that are influenced by "socioeconomic circumstances of both patient and family." The doctor-patient-relative communication process was not static with preferences changing over time. The data suggests that communication skills training of cancer clinicians should incorporate modules on better communication with relatives. © 2016 John Wiley & Sons Ltd.

The Relationship between Stroke Patients Characteristics and Family Support with Compliance Rehabilitation

Directory of Open Access Journals (Sweden)

Irma Okta Wardhani

2015-01-01

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

Environmental Design for Patient Families in Intensive Care Units

Directory of Open Access Journals (Sweden)

Mahbub Rashid

2010-01-01

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.

Emotional disorders in pairs of patients and their family members during and after ICU stay.

Directory of Open Access Journals (Sweden)

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.

Glucoregulation in normal weight schizophrenia patients treated by first generation antipsychotics

Directory of Open Access Journals (Sweden)

Marić Nađa

2008-01-01

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. .

[Screening for rehabilitation needs of patients in care of family practitioners].

Science.gov (United States)

Pullwitt, D H; Krause, O; Hildebrand, F; Fischer, G C

1997-11-01

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

Patient and family psychoeducation: Service development and implementation in a center in Iran.

Science.gov (United States)

Mirsepassi, Zahra; Tabatabaee, Maryam; Sharifi, Vandad; Mottaghipour, Yasaman

2018-02-01

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.

Assessment of the Patient-Centered and Family-Centered Care Experience of Total Joint Replacement Patients Using a Shadowing Technique.

Science.gov (United States)

Marcus-Aiyeku, Ulanda; DeBari, Margaret; Salmond, Susan

2015-01-01

In 2030, when baby boomers reach 65 years of age and represent 18% of the population, it is anticipated that 67 million adults will have a diagnosis of arthritis increasing the demand for total hip and knee arthroplasty. With the growing emphasis on patient- and family-centered care, the aim of this project was to assess the patient experience of patients and families throughout the entire spectrum of the total joint replacement service line care at a university regional trauma hospital. A shadowing methodology as defined by the Institute for Health Improvement was utilized. Eight patient/family groups undergoing total joint replacements were shadowed. The mapped care experience included time, caregiver, activity, shadower observations, and impressions. Findings revealed inconsistencies in the delivery of patient- and family-centered care. Communication and interactions were predominantly provider-centric, with a focus on care routines versus the patient and family, and anticipation that care would be medically directed.

[Social representation of family support for diabetic patients in users of a family medicine unit in Chalco, State of Mexico].

Science.gov (United States)

Rodríguez, Alejandra; Camacho, Esteban Jaime; Escoto, María Del Consuelo; Contreras, Georgina; Casas, Donovan

2014-08-27

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.

Prevalence of family history in patients with reflex syncope

DEFF Research Database (Denmark)

Holmegard, Haya N; Benn, Marianne; Kaijer, Michelle Nymann

2013-01-01

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...

Amelogenesis Imperfecta - An account of Three Generations affected in a Family

Directory of Open Access Journals (Sweden)

G Sarat

2004-01-01

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.

Detecting novel genetic mutations in Chinese Usher syndrome families using next-generation sequencing technology.

Science.gov (United States)

Qu, Ling-Hui; Jin, Xin; Xu, Hai-Wei; Li, Shi-Ying; Yin, Zheng-Qin

2015-02-01

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.

Long-Term Impacts Faced by Patients and Families After Harmful Healthcare Events.

Science.gov (United States)

Ottosen, Madelene J; Sedlock, Emily W; Aigbe, Aitebureme O; Bell, Sigall K; Gallagher, Thomas H; Thomas, Eric J

2018-01-17

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.

Perceptions of family members of palliative medicine and hospice patients who experienced music therapy.

Science.gov (United States)

Gallagher, Lisa M; Lagman, Ruth; Bates, Debbie; Edsall, Melissa; Eden, Patricia; Janaitis, Jessica; Rybicki, Lisa

2017-06-01

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.

Intergenerational transmission of dietary behaviours: A qualitative study of Anglo-Australian, Chinese-Australian and Italian-Australian three-generation families.

Science.gov (United States)

Rhodes, Kate; Chan, Flora; Prichard, Ivanka; Coveney, John; Ward, Paul; Wilson, Carlene

2016-08-01

Family food choice is complex with a number of people within the family sharing food choice and preparation responsibilities. Differences in dietary behaviours also exist between various ethnic groups worldwide, and are apparent within multicultural nations such as Australia. This study examined the intergenerational transmission of eating behaviour through semi-structured family interviews with 27 three generation families (Anglo-Australian: n = 11, Chinese-Australian: n = 8, Italian-Australian: n = 8; N = 114). The influence of generation (grandparent, parent, child), role (grandmother, grandfather, mother, father, daughter, son), and ethnic background were considered. Thematic analysis identified that regardless of ethnic background, grandmothers and mothers dominated family food choice decisions even in families where fathers were primarily responsible for the preparation of family meals. The women in each generation influenced fruit and vegetable intake by controlling purchasing decisions (e.g., by shopping for food or editing family grocery shopping lists), insisting on consumption, monitoring and reminding, utilizing food as a prerequisite for conditional treats (e.g., eating fruit before being allowed snacks), instigating and enforcing food rules (e.g., fast food only on weekends), and restricting others' food choices. Grandparents and children shared a relationship that skipped the parent generation and influenced dietary behaviours bi-directionally. These findings have implications for the delivery of dietary health messages used in disease prevention interventions designed to successfully reach culturally and linguistically diverse populations and all members of multigenerational families. Copyright © 2016 Elsevier Ltd. All rights reserved.

Family functioning in bipolar disorder: Characteristics, congruity between patients and relatives, and clinical correlates.

Science.gov (United States)

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

2016-11-30

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.

The Untapped Potential of Patient and Family Engagement in the Organization of Critical Care.

Science.gov (United States)

Haines, Kimberley J; Kelly, Phillipa; Fitzgerald, Peter; Skinner, Elizabeth H; Iwashyna, Theodore J

2017-05-01

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

Stress-coping morbidity among family members of addiction patients in Singapore.

Science.gov (United States)

Lee, Kae Meng Thomas; Manning, Victoria; Teoh, Hui Chin; Winslow, Munidasa; Lee, Arthur; Subramaniam, Mythily; Guo, Song; Wong, Kim Eng

2011-07-01

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.

Fall risk and prevention agreement: engaging patients and families with a partnership for patient safety.

Science.gov (United States)

Vonnes, Cassandra; Wolf, Darcy

2017-01-01

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

Acute psychological trauma in the critically ill: Patient and family perspectives.

Science.gov (United States)

Dziadzko, Volha; Dziadzko, Mikhail A; Johnson, Margaret M; Gajic, Ognjen; Karnatovskaia, Lioudmila V

2017-07-01

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.

Acute Physiologic Stress and Subsequent Anxiety Among Family Members of ICU Patients.

Science.gov (United States)

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

2018-02-01

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.

ocial representation of family support for diabetic patients in users of a family medicine unit in Chalco, State of Mexico

Directory of Open Access Journals (Sweden)

Alejandra Rodríguez Torres

2014-08-01

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.

The Role of Family in Family Firms

OpenAIRE

Marianne Bertrand; Antoinette Schoar

2006-01-01

History is replete with examples of spectacular ascents of family businesses. Yet there are also numerous accounts of family businesses brought down by bitter feuds among family members, disappointed expectations between generations, and tragic sagas of later generations unable to manage their wealth. A large fraction of businesses throughout the world are organized around families. Why are family firms so prevalent? What are the implications of family control for the governance, financing an...

Targeted next generation sequencing identifies functionally deleterious germline mutations in novel genes in early-onset/familial prostate cancer.

Directory of Open Access Journals (Sweden)

Paula Paulo

2018-04-01

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.

Usefulness of patient studies in learning family medicine at ...

African Journals Online (AJOL)

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 ...

The determinants of the readiness to let go among senior generation owner-managers of small and medium-sized family businesses

Directory of Open Access Journals (Sweden)

Stephan P van der Merwe

2010-09-01

Full Text Available The objective of this study was to assess the determinants of the readiness of the senior generation owner-managers to finally transfer the management and control of the family business to the younger generation. Data from 504 questionnaires linked to 81 family businesses were collected and analysed. An Oblimin oblique rotation was carried out on the principal components of the exploratory factor analysis. Five factors with eigen-values greater than one, explaining 62.64 per cent of the variance, were extracted. These five factors describing the theoretical dimensions of the dependent variable were: the senior generation owner-manager’s readiness to let go, and the independent variables of retirement planning, perceived suitability of the successor, estate planning, and the perceived liquidity of the business after the transfer. No significant practical differences relating to these five factors could be found between the perceptions of male and female respondents, the senior and younger generation family members or family members involved in medium-sized or small businesses. Practical recommendations are suggested to ensure a smooth final transfer of the management and control of the business to the younger generation family members.

Environmental Design for Patient Families in Intensive Care Units

OpenAIRE

Mahbub Rashid

2010-01-01

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...

Cultural dissonance among generations: a solution-focused approach with East Asian elders and their families.

Science.gov (United States)

Lee, Mo Yee; Mjelde-Mossey, LeeAnn

2004-10-01

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.

Influences on clinical reasoning in family and psychosocial interventions in nursing practice with patients and their families living with chronic kidney disease.

Science.gov (United States)

Thirsk, Lorraine M; Moore, Sarah G; Keyko, Kacey

2014-09-01

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.

Family caregiving challenges in advanced colorectal cancer: patient and caregiver perspectives.

Science.gov (United States)

Mosher, Catherine E; Adams, Rebecca N; Helft, Paul R; O'Neil, Bert H; Shahda, Safi; Rattray, Nicholas A; Champion, Victoria L

2016-05-01

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.

Widening the Generational Circle: Family Caregivers.

Science.gov (United States)

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…

Most important needs of family members of critical patients in light of the critical care family needs inventory.

Science.gov (United States)

Padilla Fortunatti, Cristóbal Felipe

2014-01-01

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.

Most Important Needs of Family Members of Critical Patients in Light of the Critical Care Family Needs Inventory

Directory of Open Access Journals (Sweden)

Cristóbal Felipe Padilla Fortunatti

2014-07-01

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.

Patients’ and Family Members’ Views on Patient-Centered Communication During Cancer Care

Science.gov (United States)

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.

2013-01-01

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

Family members of patients with abdominal aortic aneurysms are at increased risk for aneurysms: analysis of 618 probands and their families from the Liège AAA Family Study.

Science.gov (United States)

Sakalihasan, Natzi; Defraigne, Jean-Olivier; Kerstenne, Marie-Ange; Cheramy-Bien, Jean-Paul; Smelser, Diane T; Tromp, Gerard; Kuivaniemi, Helena

2014-05-01

The objectives were to answer the following questions with the help of a well-characterized population in Liège, Belgium: 1) what percentage of patients with abdominal aortic aneurysm (AAA) have a positive family history for AAA? 2) what is the prevalence of AAAs among relatives of patients with AAA? and 3) do familial and sporadic AAA cases differ in clinical characteristics? Patients with unrelated AAA diagnosed at the Cardiovascular Surgery Department, University Hospital of Liège, Belgium, between 1999 and 2012 were invited to the study. A detailed family history was obtained in interviews and recorded using Progeny software. We divided the 618 patients into 2 study groups: group I, 296 patients with AAA (268; 91% men) were followed up with computerized tomography combined with positron emission tomography; and group II, 322 patients with AAA (295; 92% men) whose families were invited to ultrasonographic screening. In the initial interview, 62 (10%) of the 618 patients with AAA reported a positive family history for AAA. Ultrasonographic screening identified 24 new AAAs among 186 relatives (≥50 years) of 144 families yielding a prevalence of 13%. The highest prevalence (25%) was found among brothers. By combining the number of AAAs found by ultrasonographic screening with those diagnosed previously the observed lifetime prevalence of AAA was estimated to be 32% in brothers. The familial AAA cases were more likely to have a ruptured AAA than the sporadic cases (8% vs. 2.4%; P AAA among brothers, support genetic contribution to AAA pathogenesis, and provide rationale for targeted screening of relatives of patients with AAA. Copyright © 2014 Elsevier Inc. All rights reserved.

Difference in aneurysm characteristics between patients with familial and sporadic aneurysmal subarachnoid haemorrhage

NARCIS (Netherlands)

Mensing, Liselore A.; Rinkel, Gabriel J E; Vlak, Monique H M; Van Der Schaaf, Irene C.; Ruigrok, Ynte M.

2016-01-01

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

A three-generation family with idiopathic facial palsy suggesting an autosomal dominant inheritance with high penetrance

DEFF Research Database (Denmark)

Larsen, Christian Grønhøj; Gyldenløve, Mette; Jønch, Aia Elise

2015-01-01

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...

Stress generation in a developmental context: the role of youth depressive symptoms, maternal depression, the parent-child relationship, and family stress.

Science.gov (United States)

Chan, Priscilla T; Doan, Stacey N; Tompson, Martha C

2014-02-01

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.

The associations between the family education and mortality of patients on peritoneal dialysis.

Directory of Open Access Journals (Sweden)

Zhi-Kai Yang

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.

Generation of Domestic Solid Waste in Tikrit City and The Effects of Family Size and Incomes Level on the Rate of Generation

Directory of Open Access Journals (Sweden)

Waleed M. Al Abed Raba

2013-04-01

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.                                                                                                                                  

Relations in the family of patients with infiltrative pulmonary tuberculosis and recommendations for therapeutic interaction

Directory of Open Access Journals (Sweden)

E. V. Sukhova

2015-01-01

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.

Finding privacy from a public death: a qualitative exploration of how a dedicated space for end-of-life care in an acute hospital impacts on dying patients and their families.

Science.gov (United States)

Slatyer, Susan; Pienaar, Catherine; Williams, Anne M; Proctor, Karen; Hewitt, Laura

2015-08-01

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.

Ultrabiomicroscopic-Histopathologic Correlations in Individuals with Autosomal Dominant Congenital Microcoria: Three-Generation Family Report

Directory of Open Access Journals (Sweden)

Arturo Ramirez-Miranda

2011-05-01

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.

An investigation on clinical radiological diagnosis of hereditary osteogenesis imperfect (a report of 42 patients in a family)

International Nuclear Information System (INIS)

He Junxiang; Jiang Xuzhou; Zhang Shunzhi; Huang Guomei; Mu Huinian; Li Yi; Li Meihe

1998-01-01

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

Experience and needs of family members of patients treated with extracorporeal membrane oxygenation.

Science.gov (United States)

Tramm, Ralph; Ilic, Dragan; Murphy, Kerry; Sheldrake, Jayne; Pellegrino, Vincent; Hodgson, Carol

2017-06-01

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.

Effects of continued psychological care toward brain tumor patients and their family members' negative emotions.

Science.gov (United States)

Xiao, Ning; Zhu, Dan; Xiao, Shuiyuan

2018-01-01

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.

A Typology of ICU Patients and Families from the Clinician Perspective: Toward Improving Communication.

Science.gov (United States)

Leslie, Myles; Paradis, Elise; Gropper, Michael A; Milic, Michelle M; Kitto, Simon; Reeves, Scott; Pronovost, Peter

2017-06-01

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.

Experiences of family members of patients with colostomies and expectations about professional intervention

Directory of Open Access Journals (Sweden)

Augusto Ferreira-Umpiérrez

2014-04-01

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.

Supportive and non-supportive interactions in families with a type 2 diabetes patient

DEFF Research Database (Denmark)

Bennich, Birgitte B; Røder, Michael E; Overgaard, Dorthe

2017-01-01

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...

The relationship between family social support and quality of life in diabetic female patients

Directory of Open Access Journals (Sweden)

Ali Mousavi

2017-06-01

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.

Socioeconomic impact of TB on patients registered within RNTCP and their families in the year 2007 in Chennai, India

Directory of Open Access Journals (Sweden)

Ramya Ananthakrishnan

2012-01-01

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.

A new family of thermal donors generated around 450 °C in phosphorus-doped Czochralski silicon

Science.gov (United States)

Kamiura, Yoichi; Hashimoto, Fumio; Yoneta, Minoru

1989-01-01

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.

[The family of a patient with borderline personality disorder: burden of illness and interventions for caregivers].

Science.gov (United States)

Martino, Francesca; Lia, Loredana; Bortolotti, Biancamaria; Menchetti, Marco; Monari, Marco; Ridolfi, Maria Elena; Sanza, Michele; Sasdelli, Anna; Berardi, Domenico

2014-01-01

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.

Cognitive, Personality, and Family Factors in Patients with Migraine Headache

Directory of Open Access Journals (Sweden)

Reza Johari-Fard

2014-01-01

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.

"Shared Destiny": The Dynamics of Relationships in Families of Patients With Brain Injury.

Science.gov (United States)

Segev, Einav; Levinger, Miriam; Hochman, Yael

2018-01-01

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.

Prognostic significance of cancer family history for patients with gastric cancer: a single center experience from China.

Science.gov (United States)

Liu, Xiaowen; Cai, Hong; Yu, Lin; Huang, Hua; Long, Ziwen; Wang, Yanong

2016-06-14

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.

P. 2234 – Intergenerational transmission of perceived parental rearing styles: a three generation families study

OpenAIRE

Lopes, Fábio; Espirito-Santo, Helena; Vicente, Henrique

2013-01-01

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...

Socioeconomic impact of TB on patients registered within RNTCP and their families in the year 2007 in Chennai, India.

Science.gov (United States)

Ananthakrishnan, Ramya; Jeyaraj, Anita; Palani, Gopal; Sathiyasekaran, B W C

2012-07-01

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.

The Needs of Family Members of Cancer Patients

Science.gov (United States)

1988-01-01

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

On Developments in the Mean Joint Lifetimes of Three- and Four-Generation Families in Western and Eastern Germany – A model Calculation

Directory of Open Access Journals (Sweden)

Evelyn Grünheid

2011-01-01

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

Healing the Generations: For One Family, a Language Is Lost and Rediscovered.

Science.gov (United States)

Haase, Eric

1993-01-01

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…

Familial autoimmunity and polyautoimmunity in 60 Brazilian Midwest patients with systemic sclerosis

Directory of Open Access Journals (Sweden)

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

Understanding Response Rates to Surveys About Family Members' Psychological Symptoms After Patients' Critical Illness.

Science.gov (United States)

Long, Ann C; Downey, Lois; Engelberg, Ruth A; Nielsen, Elizabeth; Ciechanowski, Paul; Curtis, J Randall

2017-07-01

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.

Emotional reactions and needs of family members of ICU patients.

Science.gov (United States)

Płaszewska-Żywko, Lucyna; Gazda, Dorota

2012-01-01

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.

Physical activity level of three generation families. Genetic and environmental factors

Directory of Open Access Journals (Sweden)

Raquel Nichele de Chaves

2010-09-01

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.

Patient empowerment in a hand hygiene program: differing points of view between patients/family members and health care workers in Asian culture.

Science.gov (United States)

Pan, Sung-Ching; Tien, Kuei-Lien; Hung, I-Chen; Lin, Yu-Jiun; Yang, Ya-Ling; Yang, Ming-Chin; Wang, Ming-Jiuh; Chang, Shan-Chwen; Chen, Yee-Chun

2013-11-01

"Patient empowerment" is an important component of World Health Organization hand hygiene program, but little is known about the intentions and attitude of patients/families and health care workers (HCWs) regarding this. A cross-sectional survey using questionnaires was conducted in a tertiary teaching hospital in Taiwan to assess hand hygiene knowledge and the attitudes and intentions regarding patient empowerment among patients/families and HCWs. Among patients/families, 95.4% (329/345) had positive attitudes regarding patient empowerment; however, only 67.2% (232/345) had the positive intention to remind HCWs about hand hygiene (P families in the pediatric department (OR, 1.86; 95% CI: 0.93-3.64). Among HCWs, the difference between positive attitude (81.1%; 714/880) and positive intention regarding being reminded about hand hygiene (62.8%; 553/880) was significant (P 25 years (OR, 3.20; 95% CI: 1.51-6.81) and a negative attitude toward patient empowerment (OR, 10.00; 95% CI: 5.88-16.67). There were significant gaps between attitude and intention regarding patient empowerment both among patients/families and HCWs. Special strategies targeting women, the pediatric population, or illiterate people may help improve patient/family participation. Additionally, hand hygiene education should be incorporated into early-stage medical/nursing education to create a facilitating environment. Patients/families and HCWs cooperation is needed to promote the hand hygiene program further. Copyright © 2013 Association for Professionals in Infection Control and Epidemiology, Inc. Published by Mosby, Inc. All rights reserved.

Determining the satisfaction levels of the family members of patients with advanced-stage cancer.

Science.gov (United States)

Ozcelik, Hanife; Cakmak, Deniz Ezgi; Fadiloglu, Cicek; Yildirim, Yasemin; Uslu, Ruchan

2015-06-01

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.

A cross-sectional descriptive study of the family functioning, health and social support of hospital patients with family violence backgrounds.

Science.gov (United States)

Kivelä, Salla; Leppäkoski, Tuija; Helminen, Mika; Paavilainen, Eija

2017-12-19

Family violence (FV) has serious effects on the health and well-being of the family. The health sector plays a vital role in FV prevention by helping to identify abuse early, providing victims with the necessary treatment and referring patients to appropriate care. The aim of the present cross-sectional study was to describe the prevalence of FV among hospital patients, as well as to assess the association between family functioning, health and social support, considering patients as the perpetrators or victims of violence. The data were collected using a Family Functioning, Health and Social Support (FAFHES) questionnaire that was given to patients who visited a Finnish central hospital between October 2012 and April 2013. As a result, the data (N = 188) were contributed by the patients who returned the questionnaire and gave permission for a follow-up survey. The participation rate was 47%, of which 73% were women and 27% were men. Their ages ranged from 18 to 89 years. The data were analysed with quantitative methods using the unadjusted analyses and linear regression model. In total, 24% of both the male and female participants had experienced or used violence at home or in the family. Of these, 22 had been the perpetrators, and 23 had been the victims. Participants in relationships and who were living together had less violence than singles and those who were not living together. The family functioning and health of the participants who had experienced or used FV were worse than those of the participants who had not. Various patients can have an FV background, and nursing professionals are on the front line to identify and intervene in FV situations. The results of this study can be utilised in the treatment of FV victims and perpetrators by training healthcare workers to identify and intervene in violence. © 2017 Nordic College of Caring Science.

Rehabilitation of stroke patients needs a family-centred approach

NARCIS (Netherlands)

Visser-Meily, Anne; Post, Marcel; Gorter, Jan Willem; Berlekom, Steven Berdenis V.; van den Bos, Trudi; Lindeman, Eline

2006-01-01

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,

The influence of family adaptability and cohesion on anxiety and depression of terminally ill cancer patients.

Science.gov (United States)

Park, Young-Yoon; Jeong, Young-Jin; Lee, Junyong; Moon, Nayun; Bang, Inho; Kim, Hyunju; Yun, Kyung-Sook; Kim, Yong-I; Jeon, Tae-Hee

2018-01-01

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.

Genetic Analyses of a Three Generation Family Segregating Hirschsprung Disease and Iris Heterochromia.

Directory of Open Access Journals (Sweden)

Long Cui

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.

A qualitative study on communication between nursing students and the family members of patients.

Science.gov (United States)

Chan, Zenobia C Y

2017-12-01

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.

Family assessment conversations as a tool to support families affected by parental mental illness: a retrospective review of electronic patient journals.

Science.gov (United States)

Lauritzen, Camilla; Kolmannskog, Anne Berit; Iversen, Anette Christine

2018-01-01

Previous research has shown a link between parental mental illness and adverse development in their offspring. In Norway, it is mandatory for health professionals to identify if patients in adult mental health services have children, and subsequently to provide support for the children. An important tool to detect if families are affected by parental mental illness and to assess if there is a need for further intervention is the Family Assessment Conversation. Family Assessment Conversations is potentially a powerful tool for communication with families affected by parental mental illness because it facilitates early identification of children at risk of various adversities due to the family situation. Additionally the tool may initiate processes that enable children and parents to cope with the situation when a parent becomes seriously ill. Little is however known about how the mental health practitioners use the family assessment form in conversations, and to what extent they record relevant information in the electronic patient journals. The main aim of the study was to provide information about the existing practice within mental health services for adults in terms of parental mental illness and family assessment conversations. The project is a retrospective journal review. The data base consists of relevant journal data from 734 patients aged 20-60 years admitted. In total, 159 recordings of family assessment conversations were discovered. The main result in this study was that many of the questions in the family assessment form lacked documented responses and assessments from the healthcare professionals. Only 17% of the participants had been assessed with the total family assessment form. Additionally, there was a lack of documentation about whether or not the children had been informed in a large proportion of the assessment forms (31%). A total of 55% say that the child has not been informed. This implies that there is still a long way to go in order to

Problems, acceptance and social inequality: a study of the deformed leprosy patients and their families.

Science.gov (United States)

Kopparty, S N

1995-09-01

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

Alcohol use among Asian American adolescent girls: the impact of immigrant generation status and family relationships.

Science.gov (United States)

Fang, Lin; Schinke, Steven P

2011-01-01

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.

The association between gender and familial prevalence of hip dysplasia in Danish patients

DEFF Research Database (Denmark)

El Jashi, Rima; Gustafson, Maria B; Jakobsen, Mette B

2017-01-01

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...

Depressive disorders and family functioning among the caregivers of patients with schizophrenia.

Science.gov (United States)

Osman, C B; Alipah, B; Tutiiryani, M D; Ainsah, O

2010-09-01

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.

Patients Know Best: Qualitative Study on How Families Use Patient-Controlled Personal Health Records

Science.gov (United States)

Schneider, Hanna; Hill, Susan

2016-01-01

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

Limited phenotypic variation of hypocalcified amelogenesis imperfecta in a danish five-generation family with a novel FAM83H nonsense mutation

DEFF Research Database (Denmark)

Haubek, Dorte; Gjørup, Hans; Jensen, Lillian Gryesten

2011-01-01

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...

[Medical and social condition of families of patients with multiple sclerosis].

Science.gov (United States)

Lugovtsova, Y A; Karnaukh, V N

2015-01-01

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.

Family functioning and perceived support from nurses during cancer treatment among Danish and Australian patients and their families

DEFF Research Database (Denmark)

Dieperink, Karin B; Coyne, Elisabeth; Creedy, Debra K

2018-01-01

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...

Implementing family communication pathway in neurosurgical patients in an intensive care unit.

Science.gov (United States)

Kodali, Sashikanth; Stametz, Rebecca; Clarke, Deserae; Bengier, Amanda; Sun, Haiyan; Layon, A J; Darer, Jonathan

2015-08-01

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.

Patient and family physician preferences for care and communication in the eventuality of anthrax terrorism.

Science.gov (United States)

Kahan, Ernesto; Fogelman, Yacov; Kitai, Eliezer; Vinker, Shlomo

2003-08-01

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.

Caregiving burden and the quality of life of family caregivers of cancer patients: the relationship and correlates.

Science.gov (United States)

Rha, Sun Young; Park, Yeonhee; Song, Su Kyung; Lee, Chung Eun; Lee, Jiyeon

2015-08-01

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.

Counseling Patients with Senile Dementia of the Alzheimer Type and Their Families.

Science.gov (United States)

LaBarge, Emily

1981-01-01

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)

Perceived family stress, parenting efficacy, and child externalizing behaviors in second-generation immigrant mothers.

Science.gov (United States)

Yaman, Ayşe; Mesman, Judi; van Ijzendoorn, Marinus H; Bakermans-Kranenburg, Marian J

2010-04-01

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.

Current practices related to family presence during acute deterioration in adult emergency department patients.

Science.gov (United States)

Youngson, Megan J; Currey, Judy; Considine, Julie

2017-11-01

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.

Clinical phenotype in relation to the distance-to-index-patient in familial hypercholesterolemia

NARCIS (Netherlands)

Besseling, Joost; Huijgen, Roeland; Martin, Seth S.; Hutten, Barbara A.; Kastelein, John J. P.; Hovingh, G. Kees

2016-01-01

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

Immune defects in families and patients with xeroderma pigmentosum and trichothiodystrophy.

Science.gov (United States)

Mariani, E; Facchini, A; Honorati, M C; Lalli, E; Berardesca, E; Ghetti, P; Marinoni, S; Nuzzo, F; Astaldi Ricotti, G C; Stefanini, M

1992-01-01

Xeroderma pigmentosum (XP) is a rare autosomal recessive disease characterized by photosensitivity, a high incidence of cancer in sun-exposed portions of the skin and a reduced capacity to repair the u.v.-induced DNA damage. One of the XP mutations (XP-D) has also been identified in patients affected by trichothiodystrophy (TTD), a rare autosomal recessive disease characterized by brittle hair, mental and physical retardation, peculiar face and ichthyosis. However, in these patients there is no evidence of increased skin tumour incidence. Since an impairment of cell-mediated immunity has been proposed as a co-factor in the cancer proneness of XP patients, we investigated the involvement of immune defect(s) in five XP patients, five TTD patients, their parents, and 24 TTD relatives. We evaluated the phenotype of circulating lymphocytes, natural killer (NK) cell lytic activity, target cell binding of NK cells at single cell level and the effect of interferons (IFN) alpha and beta on NK cell activity. The relative proportion of CD3+ and CD4+ circulating lymphocytes was reduced in XP but not in TTD patients. NK cell lytic activity was decreased in XP patients and their mothers, but their fathers showed normal lytic activity. NK activity varied among TTD families: four out of five patients and their relatives presented low NK cell activity, and one family was normal. In TTD family members, NK activity increased after incubation with IFN-alpha or IFN-beta, but never reached normal values. In contrast, in XP patients and their mothers, the defect was almost completely corrected after in vitro incubation with IFN-alpha or IFN-beta. Our study indicates impaired NK lytic activity in the majority of TTD and XP patients and that this defect is present also in members of their families. In addition, XP patients present a low number of circulating T cells. These multiple abnormalities, together with DNA repair defects, could be related to the increased cancer risk in XP patients

The next generation of LASIK patients.

Science.gov (United States)

Freeman, J Christopher; Chuck, Roy S

2009-07-01

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.

Is prevalence of colorectal polyps higher in patients with family history of colorectal cancer?

OpenAIRE

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

2015-01-01

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...

The effectiveness of telehealth care on caregiver burden, mastery of stress, and family function among family caregivers of heart failure patients: a quasi-experimental study.

Science.gov (United States)

Chiang, Li-Chi; Chen, Wan-Chou; Dai, Yu-Tzu; Ho, Yi-Lwun

2012-10-01

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

Family Partner Intervention Influences Self-Care Confidence and Treatment Self-Regulation in Patients with Heart Failure

Science.gov (United States)

Stamp, Kelly D.; Dunbar, Sandra B.; Clark, Patricia C.; Reilly, Carolyn M.; Gary, Rebecca A.; Higgins, Melinda; Ryan, Richard M

2015-01-01

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

The needs of patient family members in the intensive care unit in Kigali Rwanda

Directory of Open Access Journals (Sweden)

Petra Brysiewicz

2014-07-01

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 patient’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.

Molecular genetics of a Chinese family with spinocerebellar ataxia

Directory of Open Access Journals (Sweden)

Dan-dan WU

2015-10-01

Full Text Available Objective　To study the genotype of the members of a Chinese family with spinocerebellar ataxia (SCA. Methods　The peripheral blood samples of 6 patients and 40 asymptomatic people belonged to the family were collected. Referring to the clinical manifestations of the proband and second-generation sequencing results, the CAG trinucleotide repeats of the pathogenic gene ATXN2 were amplified by polymerase chain reaction (PCR. The repeated times of the trinucleotide in normally and abnormally amplified alleles were defined by agarose gel electrophoresis and PCR products sequencing. Results　Autosomal dominant heredity was the cause of the SCA in this family. Six out of 46 in the fourth-generation were SCA2 patients, 7 were the carriers of pathogenic allele. The repeated times of CAG trinucleotide were within the normal range in one of the two alleles of ATXN2, but they were in abnormal range in the another one. The repeated times of CAG trinucleotide were 40-46 in abnormal alleles of patients. Conclusion　Autosomal dominant heredity SCA2 has been diagnosed in this family caused by the dynamic nutation of CAG trinucleotide repeats, and 7 pathogenic allele carriers in this family were confirmed by genetic diagnosis. DOI: 10.11855/j.issn.0577-7402.2015.08.07

Life after Tracheostomy: Patient and Family Perspectives on Teaching, Transitions, and Multidisciplinary Teams.

Science.gov (United States)

McCormick, Michael E; Ward, Erin; Roberson, David W; Shah, Rahul K; Stachler, Robert J; Brenner, Michael J

2015-12-01

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.

Targeted cardiopulmonary resuscitation training focused on the family members of high-risk patients at a regional medical center: A comparison between family members of high-risk and no-risk patients.

Science.gov (United States)

Han, Kap Su; Lee, Ji Sung; Kim, Su Jin; Lee, Sung Woo

2018-05-01

We developed a hospital-based cardiopulmonary resuscitation (CPR) training model focused on the target population (family members of patients with potential risks for cardiac arrest) and compared the outcome of CPR training between target and non-target populations for validity. Family members of patients in training were divided into three groups on the basis of patients' diseases, as follows: 1) the cardio-specific (CS) risk group, including family members of patients with cardiac disease at risk of cardiac arrest; 2) the cardiovascular (CV) risk group, including family members of patients with risk factors for cardiovascular disease; and 3) the no-risk group. Pre- and posttraining surveys and skill tests as well as a post-training 3-month telephone survey were conducted. Educational outcomes were analyzed. A total of 203 family members were enrolled into 21 CPR training classes. The CS group (n=88) included elderly persons and housewives with a lower level of education compared with the CV (n=79) and no-risk groups (n=36). The CS group was motivated by healthcare professionals and participated in the training course. The CS, CV, and no-risk groups showed improvements in knowledge, willingness to perform CPR, and skills. Despite the older age and lower level of education in the CS group, the effects of education were similar to those in the other groups. A high rate of response and secondary propagation of CPR training were observed in the CS group. Family members of patients with heart disease could be an appropriate target population for CPR training, particularly in terms of recruitment and secondary propagation. Targeted intervention may be an effective training strategy to improve bystander CPR rates.

Management of patients with coronary heart disease in family medicine: correlates of quality of care.

Science.gov (United States)

Tušek-Bunc, Ksenija; Petek, Davorina

2018-04-10

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.

Associations of maternal employment and three-generation families with pre-school children's overweight and obesity in Japan.

Science.gov (United States)

Watanabe, E; Lee, J S; Kawakubo, K

2011-07-01

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

Breaking Bad News in Ethnic Settings: Perspectives of Patients and Families in Northern Sri Lanka

Directory of Open Access Journals (Sweden)

Chrishanthi Rajasooriyar

2017-06-01

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.

Radiation dose to family members of hyperthyroidism and thyroid cancer patients treated with 131I

International Nuclear Information System (INIS)

Pant, G. S.; Sharma, S. K.; Bal, C. S.; Kumar, R.; Rath, G. K.

2006-01-01

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)

Comparison of quality of life of Turkish cancer patients and their family caregivers.

Science.gov (United States)

Yesilbalkan, Oznur Usta; Ozkutuk, Nilay; Ardahan, Melek

2010-01-01

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.

Does a family meetings intervention prevent depression and anxiety in family caregivers of dementia patients? A randomized trial.

Directory of Open Access Journals (Sweden)

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

Information sharing with rural family caregivers during care transitions of hip fracture patients

Directory of Open Access Journals (Sweden)

Jacobi Elliott

2014-06-01

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.

Information sharing with rural family caregivers during care transitions of hip fracture patients

Directory of Open Access Journals (Sweden)

Jacobi Elliott

2014-06-01

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.

Family functioning in patients with obsessive compulsive disorder: A case - control study

OpenAIRE

Sateesh R Koujalgi; Raghavendra B Nayak; Adithya A Pandurangi; Nanasahed M Patil

2015-01-01

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...

Work-family and family-work conflicts amongst African nurses caring for patients with AIDS.

Science.gov (United States)

Makola, Lehlogonolo; Mashegoane, Solomon; Debusho, Legesse K

2015-12-14

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.

Genetic anticipation in Swedish Lynch syndrome families.

Science.gov (United States)

von Salomé, Jenny; Boonstra, Philip S; Karimi, Masoud; Silander, Gustav; Stenmark-Askmalm, Marie; Gebre-Medhin, Samuel; Aravidis, Christos; Nilbert, Mef; Lindblom, Annika; Lagerstedt-Robinson, Kristina

2017-10-01

Among hereditary colorectal cancer predisposing syndromes, Lynch syndrome (LS) caused by mutations in DNA mismatch repair genes MLH1, MSH2, MSH6 or PMS2 is the most common. Patients with LS have an increased risk of early onset colon and endometrial cancer, but also other tumors that generally have an earlier onset compared to the general population. However, age at first primary cancer varies within families and genetic anticipation, i.e. decreasing age at onset in successive generations, has been suggested in LS. Anticipation is a well-known phenomenon in e.g neurodegenerative diseases and several reports have studied anticipation in heritable cancer. The purpose of this study is to determine whether anticipation can be shown in a nationwide cohort of Swedish LS families referred to the regional departments of clinical genetics in Lund, Stockholm, Linköping, Uppsala and Umeå between the years 1990-2013. We analyzed a homogenous group of mutation carriers, utilizing information from both affected and non-affected family members. In total, 239 families with a mismatch repair gene mutation (96 MLH1 families, 90 MSH2 families including one family with an EPCAM-MSH2 deletion, 39 MSH6 families, 12 PMS2 families, and 2 MLH1+PMS2 families) comprising 1028 at-risk carriers were identified among the Swedish LS families, of which 1003 mutation carriers had available follow-up information and could be included in the study. Using a normal random effects model (NREM) we estimate a 2.1 year decrease in age of diagnosis per generation. An alternative analysis using a mixed-effects Cox proportional hazards model (COX-R) estimates a hazard ratio of exp(0.171), or about 1.19, for age of diagnosis between consecutive generations. LS-associated gene-specific anticipation effects are evident for MSH2 (2.6 years/generation for NREM and hazard ratio of 1.33 for COX-R) and PMS2 (7.3 years/generation and hazard ratio of 1.86). The estimated anticipation effects for MLH1 and MSH6 are

Quality of family history collection with use of a patient facing family history assessment tool.

Science.gov (United States)

Wu, R Ryanne; Himmel, Tiffany L; Buchanan, Adam H; Powell, Karen P; Hauser, Elizabeth R; Ginsburg, Geoffrey S; Henrich, Vincent C; Orlando, Lori A

2014-02-13

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.

The hidden cost of chronic fatigue to patients and their families

Directory of Open Access Journals (Sweden)

Donaldson Ana

2010-03-01

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.

Psychopathological symptoms in two generations of the same family: a cross-cultural comparison.

Science.gov (United States)

Essau, Cecilia A; Ishikawa, Shin-Ichi; Sasagawa, Satoko; Otsui, Kanako; Sato, Hiroshi; Okajima, Isa; Georgiou, George A; O'Callaghan, Jean; Bray, Diane

2013-12-01

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.

Comparative familial aggregation of bipolar disorder in patients with bipolar I and bipolar II disorders.

Science.gov (United States)

Parker, Gordon B; Romano, Mia; Graham, Rebecca K; Ricciardi, Tahlia

2018-05-01

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.

Experiences of Family Members of Dying Patients Receiving Palliative Sedation.

Science.gov (United States)

Tursunov, Olga; Cherny, Nathan I; Ganz, Freda DeKeyser

2016-11-01

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

Finnish Health Care Professionals’ Views of Patients Who Experience Family Violence

Directory of Open Access Journals (Sweden)

Inka Koistinen

2015-01-01

Full Text Available The aim of this study was to examine the beliefs health care personnel have about patients who experience family violence. This was done by analyzing the positions constructed for such patients using content analysis. The data comprise six focus groups conducted with physicians, nurses, social workers, and psychologists working in a maternity unit, a psychiatric ward, and an emergency department. The research team collected the data in 2006 in Finland. Three main positions were constructed for these patients: as a “victim,” with the classic characteristics of such; as a person damaged or disturbed in such a way that his or her victimization has become hidden behind secondary symptoms; and, as responsible for ending the violence and thus as an active contributor to and supporter of the violence. The results support the notion that health care personnel often have stereotypical beliefs about people experiencing family violence. It would be important to educate personnel about the dynamics of family violence.

Quality of life of family caregivers of cancer patients in Singapore and globally.

Science.gov (United States)

Lim, Haikel A; Tan, Joyce Ys; Chua, Joanne; Yoong, Russell Kl; Lim, Siew Eng; Kua, Ee Heok; Mahendran, Rathi

2017-05-01

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

Novel, Family-Centered Intervention to Improve Nutrition in Patients Recovering From Critical Illness: A Feasibility Study.

Science.gov (United States)

Marshall, Andrea P; Lemieux, Margot; Dhaliwal, Rupinder; Seyler, Hilda; MacEachern, Kristen N; Heyland, Daren K

2017-06-01

Critically ill patients are at increased risk of developing malnutrition-related complications because of physiological changes, suboptimal delivery, and reduced intake. Strategies to improve nutrition during critical illness recovery are required to prevent iatrogenic underfeeding and risk of malnutrition. The purpose of this study was to assess the feasibility and acceptability of a novel family-centered intervention to improve nutrition in critically ill patients. A 3-phase, prospective cohort feasibility study was conducted in 4 intensive care units (ICUs) across 2 countries. Intervention feasibility was determined by patient eligibility, recruitment, and retention rates. The acceptability of the intervention was assessed by participant perspectives collected through surveys. Participants included family members of the critically ill patients and ICU and ward healthcare professionals (HCPs). A total of 75 patients and family members, as well as 56 HCPs, were enrolled. The consent rate was 66.4%, and 63 of 75 (84%) of family participants completed the study. Most family members (53/55; 98.1%) would recommend the nutrition education program to others and reported improved ability to ask questions about nutrition (16/20; 80.0%). Family members viewed nutrition care more positively in the ICU. HCPs agreed that families should partner with HCPs to achieve optimal nutrition in the ICU and the wards. Health literacy was identified as a potential barrier to family participation. The intervention was feasible and acceptable to families of critically ill patients and HCPs. Further research to evaluate intervention impact on nutrition intake and patient-centered outcomes is required.

The effect of an anger management program for family members of patients with alcohol use disorders.

Science.gov (United States)

Son, Ju-Young; Choi, Yun-Jung

2010-02-01

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.

The role of patients' families in treatment decision-making among adult cancer patients in the Sultanate of Oman.

Science.gov (United States)

Al-Bahri, A; Al-Moundhri, M; Al-Mandhari, Z; Al-Azri, M

2018-04-17

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.

Family presence preference when patients are receiving resuscitation in an accident and emergency department.

Science.gov (United States)

Hung, Maria S Y; Pang, Samantha M C

2011-01-01

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.

Cardiovascular disease in patients with genotyped familial hypercholesterolemia in Norway during 1994-2009, a registry study.

Science.gov (United States)

Mundal, Liv; Veierød, Marit B; Halvorsen, Thomas; Holven, Kirsten B; Ose, Leiv; Iversen, Per Ole; Tell, Grethe S; Leren, Trond P; Retterstøl, Kjetil

2016-12-01

Background Familial hypercholesterolaemia increases the risk for cardiovascular disease. The primary aim of the present study was to describe sex differences in incidence and prevalence of cardiovascular disease leading to hospitalisation in a complete cohort of genotyped familial hypercholesterolaemia patients. Design and methods In this registry study data on 5538 patients with verified genotyped familial hypercholesterolaemia were linked to data on all Norwegian cardiovascular disease hospitalisations, and hospitalisations due to pre-eclampsia/eclampsia, congenital heart defects and diabetes. Results During 1994-2009 a total of 1411 of familial hypercholesterolaemia patients were hospitalised, and ischaemic heart disease was reported in 90% of them. Mean (SD) age at first hospitalisation and first re-hospitalisation was 45.1 (16.5) and 47.6 (16.3) years, respectively, with no sex differences ( P = 0.66 and P = 0.93, respectively). More men (26.9%) than women (24.1%) with familial hypercholesterolaemia were hospitalised ( P = 0.02). The median (25th-75th percentile) number of hospital admissions was four (two to seven) per familial hypercholesterolaemia patient, with no sex differences ( P = 0.87). Despite having familial hypercholesterolaemia at the time of hospitalisation, the diagnosis of familial hypercholesterolaemia was registered in only 45.7% of the patients at discharge. Conclusion Most cardiovascular disease hospitalisations were due to ischaemic heart disease. Familial hypercholesterolaemia patients were first time hospitalised at age 45.1 years, with no significant sex differences in age, which are important novel findings. The awareness and registration of the familial hypercholesterolaemia diagnosis during the hospital stays were disturbingly low.

Patients' and family members' views on how clinicians enact and how they should enact incident disclosure: the "100 patient stories" qualitative study.

Science.gov (United States)

Iedema, Rick; Allen, Suellen; Britton, Kate; Piper, Donella; Baker, Andrew; Grbich, Carol; Allan, Alfred; Jones, Liz; Tuckett, Anthony; Williams, Allison; Manias, Elizabeth; Gallagher, Thomas H

2011-07-25

To investigate patients' and family members' perceptions and experiences of disclosure of healthcare incidents and to derive principles of effective disclosure. Retrospective qualitative study based on 100 semi-structured, in depth interviews with patients and family members. Nationwide multisite survey across Australia. 39 patients and 80 family members who were involved in high severity healthcare incidents (leading to death, permanent disability, or long term harm) and incident disclosure. Recruitment was via national newspapers (43%), health services where the incidents occurred (28%), two internet marketing companies (27%), and consumer organisations (2%). Participants' recurrent experiences and concerns expressed in interviews. Most patients and family members felt that the health service incident disclosure rarely met their needs and expectations. They expected better preparation for incident disclosure, more shared dialogue about what went wrong, more follow-up support, input into when the time was ripe for closure, and more information about subsequent improvement in process. This analysis provided the basis for the formulation of a set of principles of effective incident disclosure. Despite growing prominence of open disclosure, discussion about healthcare incidents still falls short of patient and family member expectations. Healthcare organisations and providers should strengthen their efforts to meet patients' (and family members') needs and expectations.

Caring for the brain tumor patient: family caregiver burden and unmet needs.

Science.gov (United States)

Schubart, Jane R; Kinzie, Mable B; Farace, Elana

2008-02-01

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.

Presence of c.3956delC mutation in familial adenomatous polyposis patients from Brazil.

Science.gov (United States)

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

2015-08-21

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

Work-family and family-work conflicts amongst African nurses caring for patients with AIDS

Directory of Open Access Journals (Sweden)

Lehlogonolo Makola

2015-12-01

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.

BRCA1 status in Pakistani breast cancer patients with moderate family history

International Nuclear Information System (INIS)

Moatter, T.; Pervez, S.; Khan, S.; Azam, I.

2011-01-01

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)

Patient-family EoL communication and its predictors: Reports from caregivers of Latino patients in the rural U.S.-Mexico border region.

Science.gov (United States)

Ko, Eunjeong; Lee, Jaehoon; Ramirez, Carlos; Lopez, Denicka; Martinez, Stephanie

2017-10-26

Family caregivers play an important role in end-of-life (EoL) decision making when the patient is unable to make his/her own decisions. While communication about EoL care between patients and family is perhaps a first step toward advance care planning (ACP)/EoL decisions, not every culture puts great value on open communication about this topic. The aims of the present study were to explore EoL communication and the aspects of communication among caregivers of Latino patients in the rural United States (U.S.)-Mexico border region. This study analyzed data from a hospice needs assessment collected from 189 family caregivers of Latino patients at a home health agency in a rural U.S.-Mexico border region. Bivariate tests and logistic regression were used to address our aims. About half of the family caregivers (n = 96, 50.8%) reported to have ever engaged in EoL discussion with patients. Significant predictors of EoL discussion included life-sustaining treatment preference (odds ratio [OR] = 0.44, p EoL communication. Also, caregivers who worried that physicians might want to stop treatments (i.e., "pull the plug") too soon were less likely to do so. Conversely, caregivers who had knowledge about ADs were more likely to engage in EoL communication. EoL communication is a complex process influenced by individual, social, and cultural values and the beliefs of both the patient and his/her family. Inclusion of family caregivers in the ACP process and facilitating culturally tailored EoL communication between patients and family caregivers is important.

Family History of Cancer in Benign Brain Tumor Subtypes Versus Gliomas

Energy Technology Data Exchange (ETDEWEB)

Ostrom, Quinn T. [Department of Anthropology, Case Western Reserve University, Cleveland, OH (United States); McCulloh, Christopher [Case Western Reserve University School of Medicine, Cleveland, OH (United States); Chen, Yanwen; Devine, Karen; Wolinsky, Yingli, E-mail: qto@case.edu [Case Comprehensive Cancer Center, Case Western Reserve University School of Medicine, Cleveland, OH (United States)

2012-02-28

Purpose: Family history is associated with gliomas, but this association has not been established for benign brain tumors. Using information from newly diagnosed primary brain tumor patients, we describe patterns of family cancer histories in patients with benign brain tumors and compare those to patients with gliomas. Methods: Newly diagnosed primary brain tumor patients were identified as part of the Ohio Brain Tumor Study. Each patient was asked to participate in a telephone interview about personal medical history, family history of cancer, and other exposures. Information was available from 33 acoustic neuroma (65%), 78 meningioma (65%), 49 pituitary adenoma (73.1%), and 152 glioma patients (58.2%). The association between family history of cancer and each subtype was compared with gliomas using unconditional logistic regression models generating odds ratios (ORs) and 95% confidence intervals. Results: There was no significant difference in family history of cancer between patients with glioma and benign subtypes. Conclusion: The results suggest that benign brain tumor may have an association with family history of cancer. More studies are warranted to disentangle the potential genetic and/or environmental causes for these diseases.

Family History of Cancer in Benign Brain Tumor Subtypes Versus Gliomas

International Nuclear Information System (INIS)

Ostrom, Quinn T.; McCulloh, Christopher; Chen, Yanwen; Devine, Karen; Wolinsky, Yingli

2012-01-01

Purpose: Family history is associated with gliomas, but this association has not been established for benign brain tumors. Using information from newly diagnosed primary brain tumor patients, we describe patterns of family cancer histories in patients with benign brain tumors and compare those to patients with gliomas. Methods: Newly diagnosed primary brain tumor patients were identified as part of the Ohio Brain Tumor Study. Each patient was asked to participate in a telephone interview about personal medical history, family history of cancer, and other exposures. Information was available from 33 acoustic neuroma (65%), 78 meningioma (65%), 49 pituitary adenoma (73.1%), and 152 glioma patients (58.2%). The association between family history of cancer and each subtype was compared with gliomas using unconditional logistic regression models generating odds ratios (ORs) and 95% confidence intervals. Results: There was no significant difference in family history of cancer between patients with glioma and benign subtypes. Conclusion: The results suggest that benign brain tumor may have an association with family history of cancer. More studies are warranted to disentangle the potential genetic and/or environmental causes for these diseases.

Family history of cancer in benign brain tumor subtypes versus gliomas

Directory of Open Access Journals (Sweden)

Quinn eOstrom

2012-02-01

Full Text Available Purpose: Family history is associated with gliomas, but this association has not ben established for benign brain tumors. Using information from newly diagnosed primary brain tumor patients, we describe patterns of family cancer histories in patients with benign brain tumors and compare those to patients with gliomas. Methods: Newly diagnosed primary brain tumor patients were identified as part of the Ohio Brain Tumor Study (OBTS. Each patient was asked to participate in a telephone interview about personal medical history, family history of cancer, and other exposures. Information was available from 33 acoustic neuroma (65%, 78 meningioma (65%, 49 pituitary adenoma (73.1% and 152 glioma patients (58.2%. The association between family history of cancer and each subtype was compared with gliomas using unconditional logistic regression models generating odds ratios (ORs and 95% confidence intervals (95% CI. Results: There was no significant difference in family history of cancer between patients with glioma and benign subtypes. Conclusions: The results suggest that benign brain tumor may have an association with family history of cancer. More studies are warranted to disentangle the potential genetic and/or environmental causes for these diseases.

Caregiver burden in Danish family members of patients with severe brain injury

DEFF Research Database (Denmark)

Doser, Karoline; Norup, Anne

2016-01-01

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...

Guilt, censure, and concealment of active smoking status among cancer patients and family members after diagnosis: a nationwide study.

Science.gov (United States)

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

2014-05-01

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.

Chronic Pain, Patient-Physician Engagement, and Family Communication Associated With Drug-Using HIV Patients' Discussing Advanced Care Planning With Their Physicians.

Science.gov (United States)

Hansen, Eric D; Mitchell, Mary M; Smith, Tom; Hutton, Nancy; Keruly, Jeanne; Knowlton, Amy R

2017-10-01

In the era of effective antiretroviral therapy, persons living with HIV/AIDS (PLWHA) are living longer, transforming HIV into a serious chronic illness, warranting patient-provider discussion about advanced care planning (ACP). Evidence is needed to inform physicians on how to approach ACP for these patients. Chronic pain is common in PLWHA, particularly in those who have substance use disorders; although it is known that this population is at risk for poorer patient-physician engagement, the effects on ACP are unknown. To further characterize factors associated with successful ACP in PLWHA, we examined associations between patient-physician relationship, chronic pain, family communication and problem-solving skills, and rates of patients discussing ACP with their physicians. Data were from the Affirm Care study (N = 325), which examined social and environmental factors associated with health outcomes among PLWHA and their informal caregivers. In multivariate analysis, higher odds of patient reports of discussing ACP with their physicians were associated with their higher rating of their relationship with their physician (adjusted odds ratio [AOR] 1.73; P family arguments about end-of-life medical decisions (AOR 2.43; P family members about problems (AOR 1.33; P family communication and family problem-solving skills. The findings also suggest that PLWHA with chronic pain and prior family discord over end-of-life medical decisions may be primed for ACP. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Lumbar spondylolysis: A report of four cases from two generations of a family.

Science.gov (United States)

Yurube, Takashi; Kakutani, Kenichiro; Okamoto, Koji; Manabe, Michihiko; Maeno, Koichiro; Yoshikawa, Masaho; Sha, Norihide; Kuroda, Ryosuke; Nishida, Kotaro

2017-01-01

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.

Perceptions of family caregivers of cancer patients about the challenges of caregiving: a qualitative study.

Science.gov (United States)

Nemati, Shahnaz; Rassouli, Maryam; Ilkhani, Mahnaz; Baghestani, Ahmad Reza

2018-03-01

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.

Autosomal dominant familial neurohypophyseal diabetes insipidus caused by a mutation in the arginine-vasopressin II gene in four generations of a Korean family

Directory of Open Access Journals (Sweden)

Myo-Jing Kim

2014-12-01

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.

Parathyroid mitogenic activity in plasma from patients with familial multiple endocrine neoplasia type 1

International Nuclear Information System (INIS)

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.

1986-01-01

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

Using the "customer service framework" to successfully implement patient- and family-centered care.

Science.gov (United States)

Rangachari, Pavani; Bhat, Anita; Seol, Yoon-Ho

2011-01-01

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.

How family physicians respond to unpleasant emotions of ethnic minority patients.

Science.gov (United States)

Aelbrecht, Karolien; De Maesschalck, Stéphanie; Willems, Sara; Deveugele, Myriam; Pype, Peter

2017-10-01

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.

[Brain injury knowledge in family members of neurosurgical patients].

Science.gov (United States)

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.

Catastrophic Health Expenditure Among Colorectal Cancer Patients and Families: A Case of Malaysia.

Science.gov (United States)

Azzani, Meram; Yahya, Abqariyah; Roslani, April Camilla; Su, Tin Tin

2017-09-01

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.

Plasma homovanillic acid and family history of psychotic disorders in bipolar I patients.

Science.gov (United States)

Zumárraga, Mercedes; Dávila, Ricardo; Basterreche, Nieves; Arrue, Aurora; Goienetxea, Biotza; González-Torres, Miguel Angel; Guimón, José

2009-04-01

It has been suggested that the family history of psychotic disorders is useful in defining homogeneous groups of bipolar patients. The plasma homovanillic acid (pHVA) concentrations have been related to the effect of antipsychotic treatment in psychotic patients. We have studied the influence of a positive family history of psychotic disorders both on the variation of pHVA levels and on the relation between pHVA concentrations and the clinical response to treatment. Clinical status and pHVA levels were assessed in 58 medication free patients before and after 4 weeks of treatment with olanzapine and lithium. Clinical improvement correlated positively with pHVA levels on the 28th day of treatment only in the patients having first degree relatives with psychotic disorders. The pHVA levels did not decrease after 28 days of treatment. Our results reinforce the idea that a positive family history of psychosis in psychotic bipolar disorders may constitute a good basis for sub-grouping these patients.

A Novel WT1 Gene Mutation in a Three-Generation Family with Progressive Isolated Focal Segmental Glomerulosclerosis

Science.gov (United States)

Caridi, Gianluca; Malaventura, Cristina; Dagnino, Monica; Leonardi, Emanuela; Artifoni, Lina; Ghiggeri, Gian Marco; Tosatto, Silvio C.E.; Murer, Luisa

2010-01-01

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

A Comparative Study on the Meaning in Life of Patients with Cancer and Their Family Members.

Science.gov (United States)

Hassankhani, Hadi; Soheili, Amin; Hosseinpour, Issa; Eivazi Ziaei, Jamal; Nahamin, Mina

2017-12-01

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.

Family's difficulty scale in end-of-life home care: a new measure of the family's difficulties in caring for patients with cancer at the end of life at home from bereaved family's perspective.

Science.gov (United States)

Ishii, Yoko; Miyashita, Mitsunori; Sato, Kazuki; Ozawa, Taketoshi

2012-02-01

The aim of this study was to develop a tool to measure the family's difficulties in caring for cancer patients at the end of life at home: Family's Difficulty Scale in end-of-life home care (FDS). The draft of the FDS was derived from a pilot interview survey and literature reviews. The questionnaires were sent to 395 bereaved family caregivers whose family members were patients with terminal cancer receiving home service. We obtained 306 responses (response rate, 81%). Factor analysis resulted in 29 items and 8 factors: Burden of Care, Concerns about Home Care Doctor, Balance of Work and Care, Patient's Pain and Condition, Concerns about Visiting Nurse, Concerns about Home Care Service, Relationship between Family Caregivers and their Families, and Funeral Preparations. The cumulative rate of contribution was 71.8%. Cronbach coefficient α for the FDS was 0.73-0.75; the intraclass correlation coefficient in the test-retest examination was 0.75-0.85. Evidence for construct validity was confirmed by convergent and divergent validity. Concurrent validity was confirmed by significant correlations between identified factors and concurrent measures. The validity and reliability of this new instrument were confirmed. This scale should help home care providers to assess and focus on family difficulties and provide individualized care for the family who cares for a patient with terminal cancer at home.

Defining the Medical Intensive Care Unit in the Words of Patients and Their Family Members: A Freelisting Analysis.

Science.gov (United States)

Auriemma, Catherine L; Lyon, Sarah M; Strelec, Lauren E; Kent, Saida; Barg, Frances K; Halpern, Scott D

2015-07-01

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.

Family Members of Cancer Patients in Korea Are at an Increased Risk of Medically Diagnosed Depression

Directory of Open Access Journals (Sweden)

Youngdae Cho

2018-03-01

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.

Screen Shots: When Patients and Families Publish Negative Health Care Narratives Online.

Science.gov (United States)

Eijkholt, Marleen; Jankowski, Jane; Fisher, Marilyn

2017-01-01

Social media sites and their relationship to health care is a subject of intense debate. Common discussions regarding social media address patient privacy, or e-professionalism. This case study explores the tensions that arise for health care providers when negative patient statements surface in social media and blog forums. Recognizing that patients and families often find relief in sharing personal illness narratives, we contemplate if, and how, individual health care professionals and institutions should address complaints aired in public, unmoderated media. Our discussion begins by presenting a case of a family blogging on the Internet to share grievances (to deidentify the case, we have changed some details). Next, we offer an exploration of the impact on health care delivery when professionals become aware of specific criticisms published online. Strategies for managing electronic criticisms are then proposed. We conclude by proposing a novel E-THICS approach to address negative patient expressions via electronic word of mouth (eWOM). Our examination of this evolving issue focuses on maintaining satisfactory relationships between health care providers and patients/families when dealing with health care narratives published in open online media.

Measuring the satisfaction of intensive care unit patient families in Morocco: a regression tree analysis.

Science.gov (United States)

Damghi, Nada; Khoudri, Ibtissam; Oualili, Latifa; Abidi, Khalid; Madani, Naoufel; Zeggwagh, Amine Ali; Abouqal, Redouane

2008-07-01

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

Family caregiver burden: the burden of caring for lung cancer patients according to the cancer stage and patient quality of life

Directory of Open Access Journals (Sweden)

Eliana Lourenço Borges

Full Text Available ABSTRACT Objective: Patients with lung cancer experience different feelings and reactions, based on their family, social, cultural, and religious backgrounds, which are a source of great distress, not only for the patients but also for their family caregivers. This study aimed to evaluate the impact that lung cancer stage and quality of life (QoL of lung cancer patients have on caregiver burden. Methods: This was a prospective cross-sectional study. Consecutive patient-caregiver dyads were selected and asked to complete the Hospital Anxiety and Depression Scale and the Medical Outcomes Study 36-item ShortForm Health Survey (SF-36. Family caregivers also completed the Caregiver Burden Scale. Group-based modeling was used in order to identify patients with early- or advanced-stage cancer (IA to IIIA vs. IIIB to IV plus non-impaired or impaired QoL (SF36 total score > 50 vs. ≤ 50. Patient-caregiver dyads were stratified into four groups: early-stage cancer+non-impaired QoL; advanced-stage cancer+non-impaired QoL; early-stage cancer+impaired QoL; and advanced-stage cancer+impaired QoL. Results: We included 91 patient-caregiver dyads. The majority of the patients were male and heavy smokers. Family caregivers were younger and predominantly female. The burden, QoL, level of anxiety, and level of depression of caregivers were more affected by the QoL of the patients than by their lung cancer stage. The family caregivers of the patients with impaired QoL showed a higher median burden than did those of the patients with non-impaired QoL, regardless of disease stage. Conclusions: Caregiver burden is more affected by patient QoL than by lung cancer stage.

Genetic counseling for a three-generation Chinese family with Waardenburg syndrome type II associated with a rare SOX10 mutation.

Science.gov (United States)

Chen, Kaitian; Zong, Ling; Zhan, Yuan; Wu, Xuan; Liu, Min; Jiang, Hongyan

2015-05-01

Waardenburg syndrome is clinically and genetically heterogeneous. The SOX10 mutation related with Waardenburg syndrome type II is rare in Chinese. This study aimed to uncover the genetic causes of Waardenburg syndrome type II in a three-generation family to improve genetic counseling. Complete clinical and molecular evaluations were conducted in a three-generation Han Chinese family with Waardenburg syndrome type II. Targeted genetic counseling was provided to this family. We identified a rare heterozygous dominant mutation c.621C>A (p.Y207X) in SOX10 gene in this family. The premature termination codon occurs in exon 4, 27 residues downstream of the carboxyl end of the high mobility group box. Bioinformatics prediction suggested this variant to be disease-causing, probably due to nonsense-mediated mRNA decay. Useful genetic counseling was given to the family for prenatal guidance. Identification of a rare dominant heterozygous SOX10 mutation c.621C>A in this family provided an efficient way to understand the causes of Waardenburg syndrome type II and improved genetic counseling. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.

Decision-Making of Patients With Implantable Cardioverter-Defibrillators at End of Life: Family Members' Experiences.

Science.gov (United States)

Lee, Mei Ching; Sulmasy, Daniel P; Gallo, Joseph; Kub, Joan; Hughes, Mark T; Russell, Stuart; Kellogg, Anela; Owens, Sharon G; Terry, Peter; Nolan, Marie T

2017-07-01

Many patients with advanced heart failure (HF) experience the life-extending benefits of implantable cardioverter-defibrillators (ICD), but at the end stage of HF, patients may experience shocks with increasing frequency and change the plan for end-of-life (EOL) care including the deactivation of the ICD. This report describes family members' experiences of patients with ICD making decisions at EOL. Understanding the decision-making of patients with ICD at EOL can promote informed decision-making and improve the quality of EOL care. This pilot study used a mixed methods approach to test the effects of a nurse-guided discussion in decision-making about ICD deactivation (turning off the defibrillation function) at the EOL. Interviews were conducted, audiotaped, and transcribed in 2012 to 2013 with 6 family members of patients with advanced HF and ICDs. Three researchers coded the data and identified themes in 2014. Three main themes described family members' experiences related to patients having HF with ICDs making health-care decision at EOL: decision-making preferences, patients' perception on ICD deactivation, and communication methods. Health-care providers need to have knowledge of patients' decision-making preferences. Preferences for decision-making include the allowing of appropriate people to involve and encourages direct conversation with family members even when advance directives is completed. Information of ICD function and the option of deactivation need to be clearly delivered to patients and family members. Education and guidelines will facilitate the communication of the preferences of EOL care.

Association between work-family conflict and musculoskeletal pain among hospital patient care workers.

Science.gov (United States)

Kim, Seung-Sup; Okechukwu, Cassandra A; Buxton, Orfeu M; Dennerlein, Jack T; Boden, Leslie I; Hashimoto, Dean M; Sorensen, Glorian

2013-04-01

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.

Patient and Family Engagement in Designing and Implementing a Weaning Trial: A Novel Research Paradigm in Critical Care.

Science.gov (United States)

Burns, Karen E A; Devlin, John W; Hill, Nicholas S

2017-10-01

The call for meaningful patient and family engagement in research has recently gained considerable momentum. This article defines patient and family engagement broadly and specifically in clinical research. Using a multicenter, North American weaning trial as an exemplar, we describe our early experiences as clinical researchers with patient and family engagement. The role of our Patient and Family Advisory Committee in trial design and implementation is illustrated. Through our experiences, we share our insights regarding the perceived opportunities and also highlight some challenges associated with engaging patients and family engagement in critical care research. Although "engagement science" is in its infancy, engaging patients and families in research holds promise as a novel research paradigm that will not only provide new insights into the questions, methods, and outcomes used in ICU research, but it will also make investments in research more accountable and ensure a strong "patient- and family-centered focus" of our research. Copyright © 2017 American College of Chest Physicians. Published by Elsevier Inc. All rights reserved.

Genetic anticipation in Swedish Lynch syndrome families.

Directory of Open Access Journals (Sweden)

Jenny von Salomé

2017-10-01

Full Text Available Among hereditary colorectal cancer predisposing syndromes, Lynch syndrome (LS caused by mutations in DNA mismatch repair genes MLH1, MSH2, MSH6 or PMS2 is the most common. Patients with LS have an increased risk of early onset colon and endometrial cancer, but also other tumors that generally have an earlier onset compared to the general population. However, age at first primary cancer varies within families and genetic anticipation, i.e. decreasing age at onset in successive generations, has been suggested in LS. Anticipation is a well-known phenomenon in e.g neurodegenerative diseases and several reports have studied anticipation in heritable cancer. The purpose of this study is to determine whether anticipation can be shown in a nationwide cohort of Swedish LS families referred to the regional departments of clinical genetics in Lund, Stockholm, Linköping, Uppsala and Umeå between the years 1990-2013. We analyzed a homogenous group of mutation carriers, utilizing information from both affected and non-affected family members. In total, 239 families with a mismatch repair gene mutation (96 MLH1 families, 90 MSH2 families including one family with an EPCAM-MSH2 deletion, 39 MSH6 families, 12 PMS2 families, and 2 MLH1+PMS2 families comprising 1028 at-risk carriers were identified among the Swedish LS families, of which 1003 mutation carriers had available follow-up information and could be included in the study. Using a normal random effects model (NREM we estimate a 2.1 year decrease in age of diagnosis per generation. An alternative analysis using a mixed-effects Cox proportional hazards model (COX-R estimates a hazard ratio of exp(0.171, or about 1.19, for age of diagnosis between consecutive generations. LS-associated gene-specific anticipation effects are evident for MSH2 (2.6 years/generation for NREM and hazard ratio of 1.33 for COX-R and PMS2 (7.3 years/generation and hazard ratio of 1.86. The estimated anticipation effects for MLH1

Music therapy with imminently dying hospice patients and their families: facilitating release near the time of death.

Science.gov (United States)

Krout, Robert E

2003-01-01

Hospice care seeks to address the diverse needs of terminally ill patients in a number of physical, psychosocial, and spiritual areas. Family members of the patient often are included in the care and services provided by the hospice team, and hospice clinicians face a special challenge when working with families of patients who are imminently dying. When loved ones are anticipating the patient's impending death, they may find it difficult to express feelings, thoughts, and last wishes. Music therapy is a service modality that can help to facilitate such communication between the family and the patient who is actively dying, while also providing a comforting presence. Music therapy as a way to ease communication and sharing between dying patients and their loved ones is discussed in this article. The ways in which music therapy can facilitate a means of release for both patients and family members in an acute care unit of a large US hospice organization are specifically described. Case descriptions illustrate how music therapy functioned to allow five patients and their families to both come together and let go near the time of death. Elements to consider when providing such services to imminently dying patients and their families are discussed.

Radiation exposure to family members of patients with thyrotoxicosis treated with iodine-131

International Nuclear Information System (INIS)

Cappelen, Tone; Amundsen, Anne Lise; Kravdal, Gunnhild; Unhjem, Jan Frede; Foelling, Ivar

2006-01-01

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.)

A primary care audit of familial risk in patients with a personal history of breast cancer.

Science.gov (United States)

Nathan, Paul; Ahluwalia, Aneeta; Chorley, Wendy

2014-12-01

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.

The Evolving Science of Patient and Family Engagement: An Interview With Dr Karen Drenkard.

Science.gov (United States)

Reid-Ponte, Patricia

2018-02-01

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.

A survey of an organization for families of patients with serious mental illness in The Netherlands

NARCIS (Netherlands)

Schene, A. H.; van Wijngaarden, B.

1995-01-01

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

Self-cathing experience journal: Enhancing the patient and family experience in clean intermittent catheterization.

Science.gov (United States)

Holland, Jennifer E; DeMaso, David R; Rosoklija, Ilina; Johnson, Kathryn L; Manning, Diane; Bellows, Alexandra L; Bauer, Stuart B

2015-08-01

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

Genetic anticipation in a special form of hypertrophic cardiomyopathy with sudden cardiac death in a family with 74 members across 5 generations.

Science.gov (United States)

Guo, Xiying; Fan, Chaomei; Wang, Yanping; Wang, Miao; Cai, Chi; Yang, Yinjian; Zhao, Shihua; Duan, Fujian; Li, Yishi

2017-03-01

Hypertrophic cardiomyopathy (HCM) is the most common heritable heart disease. The genetic anticipation of HCM and its associated etiology, sudden cardiac death (SCD), remains unclear. The aim of this study was to investigate the mechanism underlying the genetic anticipation of HCM and associated SCD.An HCM family including 5 generations and 74 members was studied. Two-dimensional echocardiography was performed to diagnose HCM. The age of onset of HCM was defined as the age at first diagnosis according to hospital records. The information on SCD was confirmed by verification by ≥2 family members and a review of hospital records. Whole-genome sequencing was performed on 4 HCM subjects and 1 healthy control in the family. The identified mutations were screened in all available family members and 216 unrelated healthy controls by Sanger sequencing.The median ages of onset of HCM were 63.5, 38.5, and 18.0 years in members of the second, third, and fourth generations of the family, respectively, and the differences between the generations were significant (P anticipation, with a decreased age of onset and increased severity in successive generations. Multiple gene mutations may contribute to genetic anticipation in HCM and thus may be of prognostic value.

Factors affecting the nurse-patients' family communication in intensive care unit of kerman: a qualitative study.

Science.gov (United States)

Loghmani, Laleh; Borhani, Fariba; Abbaszadeh, Abbas

2014-03-01

The communication between nurses and patients' families impacts patient well-being as well as the quality and outcome of nursing care, this study aimed to demonstrated the facilitators and barriers which influence the role of communication among Iranian nurses and families member in ICU. This study is a qualitative study with content analysis. Participants were eight registered nurses and ten of patients' families. Patients were admitted to the ICU of two large university hospitals in Kerman, Iran. We used non-structured interviews for data collection. All interviews were transcribed verbatim with a simultaneous, constant comparative analysis of the audio tapes. According to data analysis, facilitative factors between nurses and families' communication consisted of spiritual care, emotional support, Participation, notification and consultation and barriers that were misunderstandings regarding treatment, job and patient difficulties. The findings led into the recognition of the important barriers and facilitators in communication between ICU team and the family of the patients. By identification of the barriers and facilitators of communication, establishing new rules and using creative methods in education and establishing the communication of ICU team especially using patient-based approach we can have effective communication.

Satisfaction with quality of ICU care for patients and families

DEFF Research Database (Denmark)

Jensen, Hanne Irene; Gerritsen, Rik T; Koopmans, Matty

2017-01-01

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...

The willingness and actual situation of Chinese cancer patients and their family members participating in medical decision-making.

Science.gov (United States)

Zhang, Jie; Yang, Dan; Deng, Yaotiao; Wang, Ying; Deng, Lei; Luo, Xinmei; Zhong, Wuning; Liu, Jie; Wang, Yuqing; Jiang, Yu

2015-12-01

In China, not only patients and physicians are involved in medical decision-making (MDM) but also the patients' family members. The objective is to investigate the willingness and actual situation of cancer patients and their family members participating in the MDM process. In this cross-sectional study, questionnaires were administered to 247 pairs of cancer inpatients and their relatives. Information regarding participants' willingness and actual experience during the decision-making process was documented. Eligible participants were cancer inpatients or their relatives, 18 years of age or older, and informed of the cancer diagnosis. All the patients should have received chemotherapy. The effective response rate was 72.9% (180/247). Over half of the patients (53.3%) and family members (57.8%) were willing to be part of the MDM process. In contrast, only 35.0% of patients and 46.1% of family members actually experienced this process (p = 0.001 and p = 0.011, respectively). Fewer family members (42.2%) than patients (53.3%) believed that patients should be involved in the MDM process (p family (odds ratio 2.577, 95% CI 1.198-5.556, p = 0.015) experienced more involvement in MDM. Although more than half of Chinese cancer patients and family members wanted to be part of MDM, the actual participation was below their expectation. Majority of family members do not want the patients to be involved in the process of MDM. Copyright © 2015 John Wiley & Sons, Ltd.

Reaching common ground: a patient-family-based conceptual framework of quality EOL care.

Science.gov (United States)

Howell, Doris; Brazil, Kevin

2005-01-01

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.

Progressively engaging: constructing nurse, patient, and family relationships in acute care settings.

Science.gov (United States)

Segaric, Cheryl Ann; Hall, Wendy A

2015-02-01

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.

Familial concordance for age at natural menopause: results from the Breakthrough Generations Study.

Science.gov (United States)

Morris, Danielle H; Jones, Michael E; Schoemaker, Minouk J; Ashworth, Alan; Swerdlow, Anthony J

2011-09-01

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.

Communicating With Dying Patients and Their Families: Multimedia Training in End-of-Life Care.

Science.gov (United States)

Chappell, Phylliss M; Healy, Jennifer; Lee, Shuko; Medellin, Glen; Sanchez-Reilly, Sandra

2017-08-01

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.

Familial tumoral calcinosis in two Chinese patients: a case series

Directory of Open Access Journals (Sweden)

Cheng Xiaoli

2011-08-01

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.

Caregiving experiences predict changes in spiritual well-being among family caregivers of cancer patients.

Science.gov (United States)

Adams, Rebecca N; Mosher, Catherine E; Cannady, Rachel S; Lucette, Aurelie; Kim, Youngmee

2014-10-01

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.

The new generation of family physicians--career motivation, life goals and work-life balance.

Science.gov (United States)

Buddeberg-Fischer, Barbara; Stamm, Martina; Buddeberg, Claus; Klaghofer, Richard

2008-05-31

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.

Meaningful Learning Moments on a Family Medicine Clerkship: When Students Are Patient Centered.

Science.gov (United States)

Huang, William Y; Rogers, John C; Nelson, Elizabeth A; Wright, Crystal C; Teal, Cayla R

2016-04-01

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.

Perceived Child Weight Status, Family Structure and Functioning, and Support for Health Behaviors in a Sample of Bariatric Surgery Patients.

Science.gov (United States)

Pratt, Keeley J; Ferriby, Megan; Noria, Sabrena; Skelton, Joseph; Taylor, Christopher; Needleman, Bradley

2018-01-29

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).

Predictors of posttraumatic stress and quality of life in family members of chronically critically ill patients after intensive care.

Science.gov (United States)

Wintermann, Gloria-Beatrice; Weidner, Kerstin; Strauß, Bernhard; Rosendahl, Jenny; Petrowski, Katja

2016-12-01

Prolonged mechanical ventilation for acute medical conditions increases the risk of chronic critical illness (CCI). Close family members are confronted with the life-threatening condition of the CCI patients and are prone to develop posttraumatic stress disorder affecting their health-related quality of life (HRQL). Main aim of the present study was to investigate patient- and family-related risk factors for posttraumatic stress and decreased HRQL in family members of CCI patients. In a cross-sectional design nested within a prospective longitudinal cohort study, posttraumatic stress symptoms and quality of life were assessed in family members of CCI patients (n = 83, aged between 18 and 72 years) up to 6 months after transfer from ICU at acute care hospital to post-acute rehabilitation. Patients admitted a large rehabilitation hospital for ventilator weaning. The Posttraumatic Stress Scale-10 and the Euro-Quality of life-5D-3L were applied in both patients and their family members via telephone interview. A significant proportion of CCI patients and their family members (14.5 and 15.7 %, respectively) showed clinically relevant scores of posttraumatic stress. Both CCI patients and family members reported poorer HRQL than a normative sample. Factors independently associated with posttraumatic stress in family members were the time following ICU discharge (β = .256, 95 % confidence interval .053-.470) and the patients' diagnosis of PTSD (β = .264, 95 % confidence interval .045-.453). Perceived satisfaction with the relationship turned out to be a protective factor for posttraumatic stress in family members of CCI patients (β = -.231, 95 % confidence interval -.423 to -.015). Regarding HRQL in family members, patients' acute posttraumatic stress at ICU (β = -.290, 95 % confidence interval -.360 to -.088) and their own posttraumatic stress 3 to 6 months post-transfer (β = -.622, 95 % confidence interval -.640 to -.358) turned out to be