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Sample records for patients family members

  1. 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.

  2. Patient and family members perspectives on radioactive iodine treatment

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    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)

  3. 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)

  4. Experiences of Family Members of Dying Patients Receiving Palliative Sedation.

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    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

  5. [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.

  6. 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.

  7. 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)

  8. 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.

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

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    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.

  10. 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

  11. Emotional reactions and needs of family members of ICU patients.

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    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.

  12. 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.

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

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    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.

  14. The needs of patient family members in the intensive care unit in ...

    African Journals Online (AJOL)

    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 ...

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

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    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.

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

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    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.

  17. The needs of family members of intensive care unit patients: A ...

    African Journals Online (AJOL)

    ARTICLE. 44 SAJCC November 2016, Vol. 32, No. 2. The needs of family members of intensive care unit patients: A ... loved one will be survival, disability or death.[1] .... the participants of this study (the constructivist paradigm, which was.

  18. 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)

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

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    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.

  20. 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.

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

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    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.

  2. Routine HIV Testing of Family Members of Hospitalized Patients in Nigeria

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    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

  3. 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.

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

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    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.

  5. 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.

  6. 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)

  7. Impact of prior ICU experience on ICU patient family members' psychological distress: A descriptive study.

    Science.gov (United States)

    Lewis, Chrystal L; Taylor, Jessica Z

    2017-12-01

    To determine if current levels of anxiety, depression and acute stress disorder symptoms differ significantly among family members of intensive-care-unit patients depending upon previous intensive-care experience. This study used a prospective, descriptive study design. Family members (N=127) from patients admitted within a 72-hour timeframe to the medical, surgical, cardiac and neurological intensive care units were recruited from waiting rooms at a medium-sized community hospital in the Southeastern United States. Participants completed the Hospital Anxiety and Depression Scale, the Impact of Events Scale-Revised, the Acute Stress Disorder Scale and a demographic questionnaire. A multivariate analysis revealed that family members of intensive-care-unit patients with a prior intensive-care experience within the past two years (n=56) were significantly more likely to report anxiety, depression and acute stress symptoms, Λ=0.92, F [4122]=2.70, p=0.034, partial η 2 =0.08, observed power=0.74. Results of this study show that family members' psychological distress is higher with previous familial or personal intensive-care experience. Nurses need to assess for psychological distress in ICU family members and identify those who could benefit from additional support services provided in collaboration with multidisciplinary support professionals. Copyright © 2017 Elsevier Ltd. All rights reserved.

  8. 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.

  9. 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.

  10. A follow-up meeting post death is appreciated by family members of deceased patients.

    Science.gov (United States)

    Kock, M; Berntsson, C; Bengtsson, A

    2014-08-01

    A practice with a follow-up meeting post death (FUMPD) with physician and staff for family members of patients who died in the intensive care unit (ICU) was started as a quality project to improve the support of families in post-ICU bereavement. A quality improvement control was conducted after 4 years. The quality improvement control was made retrospectively as an anonymous non-coded questionnaire. Part A related to the FUMPD. Part B inquired if we could contact the family member again for a research project to evaluate family support post-ICU bereavement. The questionnaires were sent to 84 family members of 56 deceased patients. Part A: 46 out of 84 family members answered and had attended a FUMPD. Ninety-one percent of the family members thought that we should continue to offer FUMPD. Seventy-eight percent were satisfied with their meeting. Eighty percent felt that they understood the cause of death. The majority wanted the meeting to take place within 6 weeks of death. Ninety-one percent rated the physician as important to be present at the meeting. The social worker was rated more important to attend the meeting than the assistant nurse. Ninety-one percent wanted to discuss the cause of death.Part B: 54 out of 84 family members answered. Twenty out of 54 did not want us to contact them again. A routine with a Follow-Up Meeting Post Death with the ICU team for the families of the patients who die in the ICU is appreciated. The presence of the physician is important. © 2014 The Acta Anaesthesiologica Scandinavica Foundation. Published by John Wiley & Sons Ltd.

  11. The spiritual struggle of anger toward God: a study with family members of hospice patients.

    Science.gov (United States)

    Exline, Julie J; Prince-Paul, Maryjo; Root, Briana L; Peereboom, Karen S

    2013-04-01

    Anger toward God is a common form of spiritual struggle, one that people often experience when they see God as responsible for severe harm or suffering. The aim of this study was to assess the prevalence, correlates, and preferred coping strategies associated with anger toward God among family members of hospice patients. Teams from a large hospice in the midwestern United States distributed surveys, one per household, to family members of home-care patients. The survey assessed feelings toward God (anger/disappointment and positive feelings), depressive symptoms, religiosity, and perceived meaning. Participants also rated their interest in various strategies for coping with conflicts with God. Surveys (n=134) indicated that 43% of participants reported anger/disappointment toward God, albeit usually at low levels of intensity. Anger toward God was associated with more depressive symptoms, lower religiosity, more difficulty finding meaning, and belief that the patient was experiencing greater pain. Prayer was the most highly endorsed strategy for managing conflicts with God. Other commonly endorsed strategies included reading sacred texts; handling the feelings on one's own; and conversations with friends, family, clergy, or hospice staff. Self-help resources and therapy were less popular options. Anger toward God is an important spiritual issue among family members of hospice patients, one that is commonly experienced and linked with depressive symptoms. It is valuable for hospice staff to be informed about the issue of anger toward God, especially because many family members reported interest in talking with hospice team members about such conflicts.

  12. 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...

  13. 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.

  14. 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.

  15. 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.

  16. 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.)

  17. Family members' experiences with intensive care unit diaries when the patient does not survive.

    Science.gov (United States)

    Johansson, Maria; Wåhlin, Ingrid; Magnusson, Lennart; Runeson, Ingrid; Hanson, Elizabeth

    2018-03-01

    The aim of the study was to explore how family members experienced the use of a diary when a relative does not survive the stay in the intensive care unit (ICU). A qualitative method with a hermeneutic approach was used. Nine participants who read/wrote eight diaries in total were interviewed. The collected data were analysed using a hermeneutic technique inspired by Geanellos. The analysis revealed an overall theme 'the diary was experienced as a bridge connecting the past with the future', which was a metaphor referring to the temporal aspect where there was the period with the diary up until the patient's death and then the postbereavement period. The diary contributed to both a rational and emotional understanding of the death of the patient and disclosed glimmers of light that still existed before the illness deteriorated. Further, the diary bridged the space between family members themselves and between family and nursing staff. It helped to maintain a feeling of togetherness and engagement in the care of the patient which family members found comforting. Family members of nonsurvivors had a need to have the ICU time explained and expressed. The diary might work as a form of 'survival kit' to gain coherence and understanding; to meet their needs during the hospital stay; and, finally, to act as a bereavement support by processing the death of the patient. © 2017 Nordic College of Caring Science.

  18. [Need for the role of the patient's family members at the intensive care unit].

    Science.gov (United States)

    Aliberch Raurell, A M; Miquel Aymar, I M

    2015-01-01

    To know the current status for the role of family members in the intensive care unit and its evolution, analyzing areas for improvement and learning about the nursing role. This work is a literature review. The selected articles included two of the key words in their title. Articles before year 2000 were excluded, except some work of great interest. Family members lose their role and suffer a crisis when one of them is at the intensive care unit. Their normal role into the family changes or disappears. Obtaining a participation role increases satisfaction and decreases anxiety in relatives. Nursing professionals are essential in addressing this need. Solving the need for this role decreases anxiety and stress on relatives and patients. Their implication on the patient process enhances and helps professionals to know the patient's background. Copyright © 2014 Elsevier España, S.L.U. y SEEIUC. All rights reserved.

  19. 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.

  20. 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.

  1. 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.

  2. 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.

  3. Psychological crisis intervention for the family members of patients in a vegetative state

    Directory of Open Access Journals (Sweden)

    Ya-Hong Li

    2012-01-01

    Full Text Available OBJECTIVES: Family members of patients in a vegetative state have relatively high rates of anxiety and distress. It is important to recognize the problems faced by this population and apply psychological interventions to help them. This exploratory study describes the psychological stress experienced by family members of patients in a vegetative state. We discuss the effectiveness of a psychological crisis intervention directed at this population and offer suggestions for future clinical work. METHODS: A total of 107 family members of patients in a vegetative state were included in the study. The intervention included four steps: acquisition of facts about each family, sharing their first thoughts concerning the event, assessment of their emotional reactions and developing their coping abilities. The Symptom Check List-90 was used to evaluate the psychological distress of the participants at baseline and one month after the psychological intervention. Differences between the Symptom Check List-90 scores at the baseline and follow-up evaluations were analyzed. RESULTS: All participants in the study had significantly higher Symptom Check List-90 factor scores than the national norms at baseline. There were no significant differences between the intervention group and the control group at baseline. Most of the Symptom Check List-90 factor scores at the one-month follow-up evaluation were significantly lower than those at baseline for both groups; however, the intervention group improved significantly more than the control group on most subscales, including somatization, obsessive-compulsive behavior, depression, and anxiety. CONCLUSION: The results of this study indicate that the four-step intervention method effectively improves the mental health of the family members who received this treatment and lessens the psychological symptoms of somatization, obsessive-compulsive behavior, depression and anxiety.

  4. Patients' experiences of care and support at home after a family member's participation in an intervention during palliative care.

    Science.gov (United States)

    Norinder, Maria; Goliath, Ida; Alvariza, Anette

    2017-06-01

    Patients who receive palliative home care are in need of support from family members, who take on great responsibility related to caregiving but who often feel unprepared for this task. Increasing numbers of interventions aimed at supporting family members in palliative care have been described and evaluated. It is not known whether and how these interventions actually affect the care or support provided to a patient, even though it has been suggested that family members would be likely to provide better care and support and thus allow for positive experiences for patients. However, this has not been studied from the perspective of the patients themselves. The objective of our study was to explore patients' experiences of care and support at home after family members' participation in a psychoeducational intervention during palliative care. Our study took a qualitative approach, and interviews were conducted with 11 patients whose family members had participated in a psychoeducational intervention during palliative home care. The interviews were analyzed employing interpretive description. Patients' experiences were represented by three themes: "safe at home," "facilitated and more honest communication," and "feeling like a unit of care." Patients felt that their needs were better met and that family members became more confident at home without risking their own health. Patients felt relieved when family members were given the opportunity to talk and reflect with others and hoped that the intervention would contribute to more honest communications between themselves and their family members. Further, it was of great importance to patients that family members receive attention from and be confirmed and supported by healthcare professionals. Our findings show how an intervention targeted at family members during palliative home care also benefits the patients.

  5. 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.

  6. How Should Clinicians Respond to Medical Requests from Clinician Family Members of Patients?

    Science.gov (United States)

    Thurston, Andrew

    2017-04-01

    In the medical profession, receiving a request for medical management from a colleague is a routine experience. However, when the colleague is a family member of a patient and the desired or requested medical intervention is not medically indicated in the attending physician's view, the situation becomes more complicated. Ethical issues include respect for patient autonomy and social justice as well as nonmaleficence. Furthermore, interpersonal and professional relationships may be tested in this situation. Addressing the colleague's concerns with empathy and respect, without compromising one's own medical judgment, is critical in resolving these kinds of conflicts. © 2017 American Medical Association. All Rights Reserved.

  7. Sun protection and sunbathing practices among at-risk family members of patients with melanoma

    Science.gov (United States)

    2011-01-01

    Background Despite the increased level of familial risk, research indicates that family members of patients with melanoma engage in relatively low levels of sun protection and high levels of sun exposure. The goal of this study was to evaluate a broad range of demographic, medical, psychological, knowledge, and social influence correlates of sun protection and sunbathing practices among first-degree relatives (FDRs) of melanoma patients and to determine if correlates of sun protection and sunbathing were unique. Methods We evaluated correlates of sun protection and sunbathing among FDRs of melanoma patients who were at increased disease risk due to low compliance with sun protection and skin surveillance behaviors. Participants (N = 545) completed a phone survey. Results FDRs who reported higher sun protection had a higher education level, lower benefits of sunbathing, greater sunscreen self-efficacy, greater concerns about photo-aging and greater sun protection norms. FDRs who reported higher sunbathing were younger, more likely to be female, endorsed fewer sunscreen barriers, perceived more benefits of sunbathing, had lower image norms for tanness, and endorsed higher sunbathing norms. Conclusion Interventions for family members at risk for melanoma might benefit from improving sun protection self-efficacy, reducing perceived sunbathing benefits, and targeting normative influences to sunbathe. PMID:21338483

  8. Activating chronic kidney disease patients and family members through the Internet to promote integration of care

    Directory of Open Access Journals (Sweden)

    Michael Trisolini

    2004-10-01

    Full Text Available Purpose: To describe the potential role of the Internet as a vehicle for improving integration of care through activating chronic kidney disease patients and their family members. Also, to describe how that potential is being developed through a website sponsored by the Medicare program in the United States. Background: The Internet is expanding at a rapid rate, and health-related websites are one of its most popular features. Efforts to promote integration of care have focused mainly on providers up to now, and more emphasis is needed on the potential roles of patients. Chronically ill patients have particular needs for improved education about their conditions and enhanced involvement in care planning and treatment decisions. Medicare developed the Dialysis Facility Compare website to serve those goals for people with chronic kidney disease. Methods: We conducted qualitative research with 140 chronic kidney disease patients and family members, and 130 renal care professionals to evaluate and improve the Dialysis Facility Compare website. A series of 19 focus groups, 13 triads (small focus groups, and 56 individual interviews were conducted in four regions of the United States and by telephone. Results: We found that the Dialysis Facility Compare website has the potential to improve integration of care for people with chronic kidney disease in at least three ways. First: by expanding the roles of patients as members of the multi-disciplinary team of caregivers treating their disease. Second: through better integration of the informal care provided in the home and community with the formal care provided by health professionals. Third: by improving coordination of between care provided in the pre-dialysis and dialysis phases of the disease. Discussion: We developed recommendations for revising and enhancing the Dialysis Facility Compare website in a number of ways to better promote patient activation and integration of care. The unique features

  9. Attitudes of cancer patients, their family members and health professionals toward active euthanasia.

    Science.gov (United States)

    Kuuppelomäki, M

    2000-03-01

    This qualitative study describes the attitudes of four groups of people in cancer care toward active euthanasia. Patients (32) with incurable cancer, their family members (13), nurses (13) and physicians (13) participated in the study which was carried out in two central hospitals and in four health centres in Finland. The data was collected by means of focused interviews which were taped, transcribed and then analysed by content analysis. More than half of the participants said that they could ethically justify active euthanasia. Most of these were family members and nurses. The main reasons for their ethical justification were the terminal illness of the patient, the presence of suffering and pain and the patient's own request. Those who could not justify active euthanasia said that one human being has no right to decide death of another. Potential abuse, uncertainty about the finality of the situation, the possibility of effective alleviation of symptoms and the effects which the practice might have on medical staff were also mentioned by this group. The results of this study support the assumption given in the earlier literature that attitudes toward active euthanasia are most positive where terminally ill cancer patients are concerned.

  10. 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

  11. Main information requests of family members of patients in Intensive Care Units.

    Science.gov (United States)

    Velasco Bueno, J M; Alonso-Ovies, A; Heras La Calle, G; Zaforteza Lallemand, C

    2017-11-03

    To compile an inventory of information requests prioritized by the family members, to find out which professionals them consider able to respond these requests, and to explore the differences in perception between family members and professionals. Qualitative analysis of content validation and descriptive cross-sectional study. 41 Spanish ICU. Relatives, physicians and nurses of critical patients. From an initial list of questions extracted from literature review, physicians, nurses, and relatives of critical patients incorporated issues that they considered not included. After analyzing content validity, a new list was obtained, which was again submitted to the participants' assessment to evaluate the level of importance that they assigned to each question and which professional they considered appropriate to answer it. most important questions for the relatives: concern about the clinical situation, measures to be taken, prognosis and information. There was a coincidence between relatives and professionals in the priority issues for families. There were significant differences in the importance given to each question: between doctors and relatives (72/82 questions), and between nurses and relatives (66/82 questions) (P<.05). For the relatives, 63% of the questions could be answered by doctors or nurses, 27% preferably by doctors and 10% by nurses. The most relevant issues for families were prognosis and severity, but also the need for information. Healthcare professionals tend to underestimate the importance of many of the questions that concern families. Relatives feel that most of their concerns can be resolved either by doctors or nurses. Copyright © 2017 Elsevier España, S.L.U. y SEMICYUC. All rights reserved.

  12. Family members' experiences of autopsy

    NARCIS (Netherlands)

    Oppewal, F; Meyboom-de Jong, B

    Background. The experiences of family members will teach us how to handle an autopsy, the ultimate quality assessment tool. Objective. The aim of this study was to determine surviving family members' experience of autopsy. Method. Seven GPs were asked to approach surviving family members of

  13. 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.

  14. Strategies for coping with family members of patients with mental disorders.

    Science.gov (United States)

    Pompeo, Daniele Alcalá; Carvalho, Arélica de; Olive, Aline Morgado; Souza, Maria da Graça Girade; Galera, Sueli Aparecida Frari

    2016-09-09

    to identify the coping strategies of family members of patients with mental disorders and relate them to family member sociodemographic variables and to the patient's clinical variables. this was a descriptive study conducted at a psychiatric hospital in the interior of the state of São Paulo, with 40 family members of hospitalized patients over the age of 18, and who followed the patient before and during hospitalization. We used tools to characterize the subjects and the Folkman and Lazarus Inventory of Coping Strategies. the coping strategies most often used by family members were social support and problem solving. Mothers and fathers used more functional strategies (self-control p=0.037, positive reappraisal p=0.037, and social support p=0,021). We found no significant differences between the strategies and other variables examined. despite the suffering resulting from the illness of a dear one, family members make more use of functional strategies, allowing them to cope with adversities in a more well-adjusted way. identificar as estratégias de enfrentamento de familiares de pacientes com transtornos mentais e relacioná-las com as variáveis sociodemográficas do familiar e clínicas do paciente. estudo descritivo, desenvolvido em hospital psiquiátrico do interior do estado de São Paulo, com 40 familiares de pacientes internados, maiores de 18 anos e que acompanhavam o paciente antes e durante a internação. Foram utilizados instrumentos para caracterização dos sujeitos e o Inventário de Estratégias de Enfrentamento de Folkman e Lazarus. as estratégias de enfrentamento mais utilizadas pelos familiares foram suporte social e resolução de problemas. Pais e mães utilizaram mais estratégias funcionais (autocontrole p=0,037; reavaliação positiva p=0,037; suporte social p=0,021). Não foram evidenciadas diferenças significativas entre as estratégias e as demais variáveis estudadas. apesar do sofrimento causado pelo impacto do adoecimento do seu

  15. Patients' and their family members' experiences of participation in care following an acute exacerbation in chronic obstructive pulmonary disease

    DEFF Research Database (Denmark)

    Andersen, Ingrid Charlotte; Thomsen, Thora Grothe; Bruun, Poul

    2017-01-01

    , knowledge of the significance of patient and family participation for recovery and subsequent everyday life is still limited. DESIGN: This study adopted a longitudinal design informed by ethnographic fieldwork principles. METHODS: Participant observations and interviews with 15 patients and 12 family......AIM AND OBJECTIVES: To explore the experiences of patients with chronic obstructive pulmonary disease (COPD) and their family members relating to both participation in care during hospitalization for an acute exacerbation in COPD, and to the subsequent day-to-day care at home. BACKGROUND: When...... recovering from an exacerbation, the challenges associated with an unpredictable health condition dominate everyday life for patients and can involve their family members. Proper patient and family participation in care during discharge and follow-up can help patients to improve self-management. However...

  16. Usability of a CKD Educational Website Targeted to Patients and Their Family Members

    Science.gov (United States)

    Zuckerman, Marni; Fink, Wanda; Hu, Peter; Yang, Shiming; Fink, Jeffrey C.

    2012-01-01

    Summary Background and objectives Web-based technology is critical to the future of healthcare. As part of the Safe Kidney Care cohort study evaluating patient safety in CKD, this study determined how effectively a representative sample of patients with CKD or family members could interpret and use the Safe Kidney Care website (www.safekidneycare.org), an informational website on safety in CKD. Design, setting, participants, & measurements Between November of 2011 and January of 2012, persons with CKD or their family members underwent formal usability testing administered by a single interviewer with a second recording observer. Each participant was independently provided a list of 21 tasks to complete, with each task rated as either easily completed/noncritical error or critical error (user cannot complete the task without significant interviewer intervention). Results Twelve participants completed formal usability testing. Median completion time for all tasks was 17.5 minutes (range=10–44 minutes). In total, 10 participants had greater than or equal to one critical error. There were 55 critical errors in 252 tasks (22%), with the highest proportion of critical errors occurring when participants were asked to find information on treatments that may damage kidneys, find the website on the internet, increase font size, and scroll to the bottom of the webpage. Participants were generally satisfied with the content and usability of the website. Conclusions Web-based educational materials for patients with CKD should target a wide range of computer literacy levels and anticipate variability in competency in use of the computer and internet. PMID:22798537

  17. [Deep brain stimulation - expectations and doubts. A nationwide questionnaire study of patients with Parkinson's disease and their family members].

    Science.gov (United States)

    Südmeyer, M; Volkmann, J; Wojtecki, L; Deuschl, G; Schnitzler, A; Möller, B

    2012-04-01

    The aim of this questionnaire-based study was to determine the decision-making motives from Parkinson's patients and their family members for deep brain stimulation (DBS), which are crucial for the attitude towards this therapy and which should be considered during the clinical interview. The questionnaire was sent out nationwide to members of the German Parkinson Association. Patient and family specific data as well as information sources, doubts and expectations with respect to DBS were assessed. A total of 582 patients and 476 family members answered the questionnaire, revealing that 96% of the patients and 91% of the family members already possessed information regarding DBS. While a large proportion of interviewees had specific expectations concerning DBS, more than two thirds expressed concerns regarding DBS; the most frequent with respect to intraoperative complications and stimulation-induced worsening of symptoms. The quantity of realistic patients and family expectations significantly correlated with a positive evaluation of DBS and doubts as well as unrealistic expectations of family members correlated with a negative attitude towards the operation. The findings suggest that patients and their relatives organized in support groups indeed possess detailed information regarding DBS. However, for the acceptance of the treatment a timely elucidation about DBS as well as responding to the individual concerns by the consulting physician is essential.

  18. Preferences of Current and Potential Patients and Family Members Regarding Implementation of Electronic Communication Portals in Intensive Care Units.

    Science.gov (United States)

    Brown, Samuel M; Bell, Sigall K; Roche, Stephanie D; Dente, Erica; Mueller, Ariel; Kim, Tae-Eun; O'Reilly, Kristin; Lee, Barbara Sarnoff; Sands, Ken; Talmor, Daniel

    2016-03-01

    The quality of communication with patients and family members in intensive care units (ICUs) is a focus of current interest for clinical care improvement. Electronic communication portals are commonly used in other healthcare settings to improve communication. We do not know whether patients and family members desire such portals in ICUs, and if so, what functionality they should provide. To define interest in and desired elements of an electronic communication portal among current and potential ICU patients and their family members. We surveyed, via an Internet panel, 1,050 English-speaking adults residing in the United States with a personal or family history of an ICU admission within 10 years (cohort A) and 1,050 individuals without a history of such admission (cohort B). We also administered a survey instrument in person to 105 family members of patients currently admitted to ICUs at an academic medical center in Boston (cohort C). Respondents, especially current ICU family members, supported an electronic communication portal, including access via an electronic tablet. They wanted at least daily updates, one-paragraph summaries of family meetings including a list of key decisions made, and knowledge of the role and experience of treating clinicians. Overall, they preferred detailed rather than "big picture" information. Respondents were generally comfortable sharing information with their family members. Preferences regarding a communication portal varied significantly by age, sex, ethnicity, and prior experience with ICU hospitalization. Electronic communication portals appear welcome in contemporary ICUs. Frequent updates, knowledge about the professional qualifications of clinicians, detailed medical information, and documentation of family meetings are particularly desired.

  19. Impact of a visual aid on discordance between physicians and family members about prognosis of critically ill patients.

    Science.gov (United States)

    Burelli, Gabrielle; Berthelier, Chloé; Vanacker, Hélène; Descaillot, Léonard; Philippon-Jouve, Bénédicte; Fabre, Xavier; Kaaki, Mahmoud; Chakarian, Jean-Charles; Domine, Alexandre; Beuret, Pascal

    2018-06-01

    This study aimed to evaluate the impact of a visual aid on the discordance about prognosis between physicians and family members. The study was performed in a general intensive care department with two 6-bed units. In the unit A, family members could consult a visual aid depicting day by day the evolution of global, hemodynamic, respiratory, renal and neurological conditions of the patient on a 10-point scale. In the unit B, they only received oral medical information. On day 7 of the ICU stay, the physician and family members estimated the prognosis of the patient among four proposals (life threatened; steady state but may worsen; steady state, should heal; will heal). Then we compared the rate of discordance about prognosis between physicians and family members in the two units. Seventy-nine consecutive patients admitted in the intensive care department and still present at day 7, their family members and physicians, were enrolled. Patients in the two units were comparable in age, sex ratio, reason for admission, SAPS II at admission and SOFA score at day 7. In the unit A, physician-family members discordance about prognosis occurred for 12 out of 39 patients (31%) vs. 22 out of 40 patients (55%) in the unit B (P=0.04). In our study, adding a visual aid depicting the evolution of the condition of critically ill patients day by day to classic oral information allowed the family to have an estimate of the prognosis less discordant with the estimate of the physician. Copyright © 2018 Société française d'anesthésie et de réanimation (Sfar). Published by Elsevier Masson SAS. All rights reserved.

  20. 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.

  1. A genetic diagnosis of maturity-onset diabetes of the young (MODY): experiences of patients and family members.

    Science.gov (United States)

    Bosma, A R; Rigter, T; Weinreich, S S; Cornel, M C; Henneman, L

    2015-10-01

    Genetic testing for maturity-onset diabetes of the young (MODY) facilitates a correct diagnosis, enabling treatment optimization and allowing monitoring of asymptomatic family members. To date, the majority of people with MODY remain undiagnosed. To identify patients' needs and areas for improving care, this study explores the experiences of patients and family members who have been genetically tested for MODY. Fourteen semi-structured interviews with patients and the parents of patients, and symptomatic and asymptomatic family members were conducted. Atlas.ti was used for thematic analysis. Most people with MODY were initially misdiagnosed with Type 1 or Type 2 diabetes; they had been seeking for the correct diagnosis for a long time. Reasons for having a genetic test included reassurance, removing the uncertainty of developing diabetes (in asymptomatic family members) and informing relatives. Reasons against testing were the fear of genetic discrimination and not having symptoms. Often a positive genetic test result did not come as a surprise. Both patients and family members were satisfied with the decision to get tested because it enabled them to adjust their lifestyle and treatment accordingly. All participants experienced a lack of knowledge of MODY among healthcare professionals, in their social environment and in patient organizations. Additionally, problems with the reimbursement of medical expenses were reported. Patients and family members are generally positive about genetic testing for MODY. More education of healthcare professionals and attention on the part of diabetes organizations is needed to increase awareness and optimize care and support for people with MODY. © 2015 The Authors. Diabetic Medicine © 2015 Diabetes UK.

  2. Anxiety, stress and depression in family members of patients with heart failure.

    Science.gov (United States)

    Lacerda, Marianna Sobral; Cirelli, Melissa Alves; Barros, Alba Lúcia Bottura Leite de; Lopes, Juliana de Lima

    2017-03-20

    Identifying the level of anxiety, stress and depression symptoms in family members of patients with heart failure; identifying the relationship between these feelings with sociodemographic and clinical variables. A cross-sectional study carried out with 100 family members. Depression, anxiety, and stress were evaluated by the Beck Depression and Anxiety Inventories and the Perceived Stress Scale - 10. The relationship between feelings and variables was performed through the t-test, Mann-Whitney or Kruskal-Wallis. Mean depression was 8.24, anxiety was 77.95, and stress was 17.43. The correlation coefficient between depression and anxiety and depression and stress was 0.53, and it was 0.66 between anxiety and stress. Females (p=0.002, p=0.031), smoking (p=0.05, p=0.011) and sedentary lifestyle (p=0.023, p=0.001) were related to anxiety and stress, respectively. Family income lower than five minimum wages (p=0.012) was related to depression, and regular/poor self-perceived health status related to the three feelings. Family members did not present high levels of these feelings. The scales were directly correlated with each one another and some variables were related to stress, anxiety and depression. Identificar o nível de ansiedade, estresse e sintomas de depressão de familiares de pacientes com insuficiência cardíaca; identificar a relação entre esses sentimentos com as variáveis sociodemográficas e clínicas. Estudo transversal composto por 100 familiares. A depressão, a ansiedade e o estresse foram avaliados pelos Inventários de Depressão e Ansiedade de Beck e pela Escala de Estresse Percebido ‒ 10. A relação dos sentimentos com as variáveis foi realizada pelo teste t, Mann-Whitney ou Kruskal-Wallis. A média de depressão foi de 8,24, ansiedade, 7,95 e estresse, 17,43. O coeficiente de correlação entre depressão e ansiedade e depressão e estresse foi de 0,53 e de 0,66 entre ansiedade e estresse. Sexo feminino (p=0,002; p=0,031), tabagismo (p=0

  3. Comparing quality of dying and death perceived by family members and nurses for patients dying in US and Dutch ICUs

    DEFF Research Database (Denmark)

    Gerritsen, Rik T; Koopmans, Matty; Hofhuis, José G M

    2017-01-01

    with 8 higher in the US and 2 higher in NL. CONCLUSION: The QODD was rated similarly by family members in the US and the Netherlands but varied when assessed by nurses. These differences may be due to organizational or cultural differences between the two countries or to expectations of respondents.......BACKGROUND: The Quality of Dying and Death (QODD) questionnaire is used as a self-reported measure to allow families and clinicians to assess patients' quality of dying and death. We evaluated end-of-life (EOL) experiences as measured by the QODD completed by families and nurses in the United...... States (US) and the Netherlands (NL) to explore similarities and differences in these experiences and identify opportunities for improving EOL care. METHODS: Questionnaire data were gathered from family members of patients dying in the ICU and nurses caring for these patients. In NL, data were gathered...

  4. 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.

  5. Patient accuracy of reporting on hereditary non-polyposis colorectal cancer-related malignancy in family members

    DEFF Research Database (Denmark)

    Katballe, Niels; Juul, Svend; Christensen, M.

    2001-01-01

    was rejected in three of 14 cases (false-positive rate 21 per cent). Furthermore, seven of 18 probands whose families met the Amsterdam criteria I or II after verification were identified by further exploration in families who, according to the probands, met weaker criteria (false-negative rate 39 per cent......). CONCLUSION: The present study suggests that family studies on HNPCC are not reliable unless the diagnoses of family members are verified from official sources. If endoscopic screening is offered entirely on the basis of unverified information from patients with colorectal cancer, there is a risk that a large...

  6. Sleep, anxiety and fatigue in family members of patients admitted to the intensive care unit: a questionnaire study.

    Science.gov (United States)

    Day, Alex; Haj-Bakri, Samer; Lubchansky, Stephanie; Mehta, Sangeeta

    2013-05-24

    Family members of critically ill patients often experience increased incidence of physical and mental health issues. One of the first ways family members suffer is by losing sleep. The purpose of this study is to understand sleep quality, levels of fatigue and anxiety, and factors contributing to poor sleep in adult family members of critically ill patients. A questionnaire was designed to evaluate sleep, fatigue and anxiety during the intensive care unit (ICU) admission. We incorporated three validated instruments: General Sleep Disturbance Scale (GSDS), Beck Anxiety Index (BAI) and Lee Fatigue Scale (NRS-F). Adult family members of patients in ICU for more than 24 hours were approached for questionnaire completion. Patient demographics were recorded. The study population consisted of 94 respondents, (49.1 ± 12.9 years, 52.7% male); 43.6% were children and 21.3% were spouses of ICU patients. Sleep quality was rated as poor/very poor by 43.5% of respondents, and good/very good by 15.2%. The most common factors contributing to poor sleep were anxiety (43.6%), tension (28.7%) and fear (24.5%). Respondents' most common suggestions to improve sleep were more information regarding the patient's health (24.5%) and relaxation techniques (21.3%). Mean GSDS score was 38.2 ± 19.3, with 58.1% of respondents experiencing moderate to severe sleep disturbance. Mean BAI was 12.3 ± 10.2, with 20.7% of respondents experiencing moderate to severe anxiety. Mean NRS-F was 3.8 ± 2.5, with 57.6% of respondents experiencing moderate to high fatigue. Family members who spent one or more nights in the hospital had significantly higher GSDS, BAI and NRS-F scores. The patient's Acute Physiology and Chronic Health Evaluation (APACHE) II score at survey completion correlated significantly with family members' GSDS, BAI and NRS-F. The majority of family members of ICU patients experience moderate to severe sleep disturbance and fatigue, and mild anxiety.

  7. Communication Among Melanoma Family Members

    Science.gov (United States)

    Bowen, Deborah J; Albrecht, Terrance; Hay, Jennifer; Eggly, Susan; Harris-Wei, Julie; Meischke, Hendrika; Burke, Wylie

    2017-01-01

    Interventions to improve communication among family members may facilitate information flow about familial risk and preventive health behaviors. This is a secondary analysis of the effects of an interactive website intervention aimed at increasing communication frequency and agreement about health risk among melanoma families. Participants were family units, consisting of one family member with melanoma identified from a previous research study (the case) and an additional first degree relative and a parent of a child 0–17. Family triads were randomized to receive access to the website intervention or to serve as control families. Family communication frequency and agreement about melanoma prevention behaviors and beliefs were measured at baseline and again at one year post randomization. Intervention participants of all three types significantly increased the frequency of communication to their first degree relatives (Parents, siblings, children; range =14–18 percentage points; all pcommunication about cancer risk. PMID:28248624

  8. Vigorous physical activity impairs myocardial function in patients with arrhythmogenic right ventricular cardiomyopathy and in mutation positive family members

    DEFF Research Database (Denmark)

    Saberniak, Jørg; Hasselberg, Nina E; Borgquist, Rasmus

    2014-01-01

    patients and 45 mutation-positive family members. Athletes were defined as subjects with ≥4 h vigorous exercise/week [≥1440 metabolic equivalents (METs × minutes/week)] during a minimum of 6 years. Athlete definition was fulfilled in 37/110 (34%) subjects. We assessed right ventricular (RV) and left...

  9. A genetic diagnosis of maturity-onset diabetes of the young (MODY): experiences of patients and family members

    NARCIS (Netherlands)

    Bosma, A.R.; Rigter, T.; Weinreich, S.S.; Cornel, M.C.; Henneman, L.

    2015-01-01

    Aims: Genetic testing for maturity-onset diabetes of the young (MODY) facilitates a correct diagnosis, enabling treatment optimization and allowing monitoring of asymptomatic family members. To date, the majority of people with MODY remain undiagnosed. To identify patients' needs and areas for

  10. Shame and guilt/self-blame as predictors of expressed emotion in family members of patients with schizophrenia

    Science.gov (United States)

    Wasserman, Stephanie; Weisman de Mamani, Amy; Suro, Giulia

    2012-01-01

    Expressed emotion (EE) is a measure of the family environment reflecting the amount of criticism and emotional over-involvement expressed by a key relative towards a family member with a disorder or impairment. Patients from high EE homes have a poorer illness prognosis than do patients from low EE homes. Despite EE's well-established predictive validity, questions remain regarding why some family members express high levels of EE attitudes while others do not. Based on indirect evidence from previous research, the current study tested whether shame and guilt/self-blame about having a relative with schizophrenia serve as predictors of EE. A sample of 72 family members of patients with schizophrenia completed the Five Minute Speech Sample to measure EE, along with questionnaires assessing self-directed emotions. In line with the hypotheses, higher levels of both shame and guilt/self-blame about having a relative with schizophrenia predicted high EE. Results of the current study elucidate the EE construct and have implications for working with families of patients with schizophrenia. PMID:22357355

  11. Religious care required for Japanese terminally ill patients with cancer from the perspective of bereaved family members.

    Science.gov (United States)

    Okamoto, Takuya; Ando, Michiyo; Morita, Tatsuya; Hirai, Kei; Kawamura, Ryo; Mitsunori, Miyashita; Sato, Kazuki; Shima, Yasuo

    2010-02-01

    The aim of this study was to explore the most suitable religious care for Japanese terminally ill patients with cancer based on the opinions of bereaved family members. A multicenter questionnaire survey on palliative care service was sent to 592 bereaved family members of patients with cancer who were admitted to palliative care units in Japan, and 430 responded by mail. In the section of the questionnaire about religious care, 382 responses were used for quantitative analysis, and 71 responses about religious care for qualitative analysis. In the current study, the 71 responses were grouped into families with and without a religion and were analyzed qualitatively. Families with a religion (N = 28) chose answers such as ''Instrumental care'' such as music or a religious event, ''Freedom of choice of kinds for religious care,'' ''Staff involvement of religious care,'' ''Meeting with a pastoral care workers,'' and ''Burden of offering a different kind of personal religion.'' In contrast, families without a religion (N = 44) chose answers such as ''Instrumental care,'' ''Freedom of choice whether patients receive religious care or not,'' ''Spiritual care,'' ''Not being able to accept religious care,'' and ''Burden of thinking about a religion and nuisance.'' These findings suggest that Japanese bereaved families with a religion generally regard religious care positively and prefer care through their own religion, whereas some families without a religion require religious care but some do not prefer it.

  12. 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.

  13. Bringing Value-Based Perspectives to Care: Including Patient and Family Members in Decision-Making Processes

    Directory of Open Access Journals (Sweden)

    Graeme Kohler

    2017-11-01

    Full Text Available n a gap in consistent application of system-level strategies that can effectively translate organizational policies around patient and family engagement into practice. Methods The broad objective of this initiative was to develop a system-level implementation strategy to include patient and family advisors (PFAs at decision-making points in primary healthcare (PHC based on wellestablished evidence and literature. In this opportunity sponsored by the Canadian Foundation for Healthcare Improvement (CFHI a co-design methodology, also well-established was applied in identifying and developing a suitable implementation strategy to engage PFAs as members of quality teams in PHC. Diabetes management centres (DMCs was selected as the pilot site to develop the strategy. Key steps in the process included review of evidence, review of the current state in PHC through engagement of key stakeholders and a co-design approach. Results The project team included a diverse representation of members from the PHC system including patient advisors, DMC team members, system leads, providers, Public Engagement team members and CFHI improvement coaches. Key outcomes of this 18-month long initiative included development of a working definition of patient and family engagement, development of a Patient and Family Engagement Resource Guide and evaluation of the resource guide. Conclusion This novel initiative provided us an opportunity to develop a supportive system-wide implementation plan and a strategy to include PFAs in decision-making processes in PHC. The well-established co-design methodology further allowed us to include value-based (customer driven quality and experience of care perspectives of several important stakeholders including patient advisors. The next step will be to implement the strategy within DMCs, spread the strategy PHC, both locally and provincially with a focus on sustainability.

  14. A Radiation Badge Survey for Family Members Living With Patients Treated With a 103Pd Permanent Breast Seed Implant

    International Nuclear Information System (INIS)

    Keller, Brian M.; Pignol, Jean-Philippe; Rakovitch, Eileen; Sankreacha, Raxa; O'Brien, Peter

    2008-01-01

    Purpose: Sixty-seven patients with early-stage breast cancer were treated in a Phase I/II clinical trial using a 103 Pd permanent breast seed implant as adjuvant radiotherapy after breast-conserving surgery. We report the dose received by family members living with these patients and compare measured doses with theoretical worst-case scenario estimates. Methods and Materials: Exposure-rate measurements were taken at 1 m from the patient by using a calibrated low-energy survey meter. Landauer (Landauer Inc., Glenwood, IL) Luxel badges, with sensitivity of 0.01 mSv, were given to family members to wear after the implantation. Badge readings for 33 spouses and 28 other family members were used to estimate effective doses, and these were compared with theory. Results: Average preimplantation planning target volume from computed tomography was 50.3 ml (range, 18.0-96.7 ml), and average preimplantation distance between the skin and the most anterior planning target volume margin was 0.57 cm. The average maximum exposure rate was measured to be 2.4 ± 1.1 mR/h, and average measured dose to a spouse was 0.99 ± 1.0 mSv. The calculated exposure rates and spousal doses using preimplantation computed tomography scan data overestimated those measured. Average measured family member dose (excluding spouses) was 0.20 ± 0.58 mSv. Conclusions: Based on measured and calculated spousal doses, a permanent breast seed implant using 103 Pd is safe for the public. However, it is recommended that extra precautions in the way of a breast patch be used when patients with an implant will be in the vicinity of toddlers or pregnant women

  15. Breaking bad news in the emergency department: a comparative analysis among residents, patients and family members' perceptions.

    Science.gov (United States)

    Toutin-Dias, Gabriela; Daglius-Dias, Roger; Scalabrini-Neto, Augusto

    2018-02-01

    Our main objective was to assess patient and family members' perception of bad news communication in the emergency department (ED) and compare these with physicians' perceptions. This is a cross-sectional study carried out at the ED of a tertiary teaching hospital. To compare physicians' and receivers' (patient and/or family member) perceptions, we created a survey based on the six attributes derived from the SPIKES protocol. The surveys were applied immediately after communication of bad news occurred in the ED. We analyzed agreement among participants using κ-statistics and the χ-test to compare proportions. A total of 73 bad news communication encounters were analyzed. The survey respondents were 73 physicians, 69 family members, and four patients. In general, there is a low level of agreement between physicians' and receivers' perceptions of how breaking bad news transpired. The satisfaction level of receivers, in terms of breaking bad news by doctors, presented a mean of 3.7±0.6 points. In contrast, the physicians' perception of the communication was worse (2.9±0.6 points), with P value less than 0.001. Doctors and receivers disagree in relation to what transpired throughout bad news communications. Discrepancies were more evident in issues involving emotion, invitation, and privacy. An important agreement between perceptions was found in technical and knowledge-related aspects of the communication.

  16. The nursing team and the family member accompanying adult patients in the hospital context. An exploratory study

    Directory of Open Access Journals (Sweden)

    Thayane Dias dos Santos

    2013-07-01

    Full Text Available Objective. To identify the actions of family members who accompany adult hospitalized patients and to describe the nursing team's role regarding that person. Methodology. In this qualitative, descriptive and exploratory research, a questionnaire was applied to 30 nursing team members at a teaching hospital located in the State of Rio de Janeiro, using open questions. To interpret the answers, thematic analysis was applied to categorize the identified qualitative variables. Results. Eighty-nine percent of the participants were female. When analyzing the information contained in the answers to the questionnaire, two types of actions were found: the actions the companion can perform for his/her relative and the actions the nursing team needs to perform. In each action, the following categories were verified: affective dimension, practical dimension, moral dimension and inclusion of the family in care. According to the nursing team, the companion plays a very important role in emotional support and help with the patient's basic hygiene, although this care should be offered under nursing orientation. Conclusion. Family companions and nursing team members work together to improve the quality of patient care, with positive reflections for their integration in hospital care, which will enhance its continuity in the home-care context.

  17. Facilitators and barriers to hypertension self-management in urban African Americans: perspectives of patients and family members

    Directory of Open Access Journals (Sweden)

    Flynn SJ

    2013-08-01

    Full Text Available Sarah J Flynn,1,2 Jessica M Ameling,1,2 Felicia Hill-Briggs,1–3 Jennifer L Wolff,4,5 Lee R Bone,1,3 David M Levine,1,4 Debra L Roter,3 LaPricia Lewis-Boyer,1,2 Annette R Fisher,6 Leon Purnell,6 Patti L Ephraim,2,7 Jeffrey Barbers,1,2 Stephanie L Fitzpatrick,1,2 Michael C Albert,1,8 Lisa A Cooper,1,2 Peter J Fagan,9,10 Destiny Martin,1 Hema C Ramamurthi,1,2 L Ebony Boulware1,2,7 1Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, USA; 2Welch Center for Prevention, Epidemiology, and Clinical Research, Johns Hopkins Medical Institutions, Baltimore, MD, USA; 3Department of Health, Behavior, and Society, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA; 4Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA; 5Division of Geriatric Medicine and Gerontology, Johns Hopkins University School of Medicine, Baltimore, MD, USA; 6Community and Provider Advisory Board, Johns Hopkins Center to Eliminate Cardiovascular Health Disparities, Baltimore, MD, USA; 7Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA; 8Johns Hopkins Community Physicians, Johns Hopkins Medical Institutions, Baltimore, MD, USA; 9Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, Baltimore, MD, USA; 10Johns Hopkins HealthCare LLC, Glen Burnie, MD, USA Introduction: We aimed to inform the design of behavioral interventions by identifying patients’ and their family members’ perceived facilitators and barriers to hypertension self-management. Materials and methods: We conducted focus groups of African American patients with hypertension and their family members to elicit their views about factors influencing patients’ hypertension self-management. We recruited African American patients with hypertension (n = 18 and their family members (n = 12 from an urban, community-based clinical

  18. The impact of meticillin-resistant Staphylococcus aureus on patients with advanced cancer and their family members: A qualitative study.

    Science.gov (United States)

    Gleeson, Aoife; Larkin, Philip; O'Sullivan, Niamh

    2016-04-01

    Little is known about the impact of meticillin-resistant Staphylococcus aureus on patients with advanced cancer, such as its impact on the quality of life of this vulnerable group. To date, research on meticillin-resistant Staphylococcus aureus in the palliative care setting has had a quantitative focus. The purpose of this study was to explore the impact of a meticillin-resistant Staphylococcus aureus diagnosis on patients and their carers. This article reports upon a qualitative interview study of nine patients with advanced cancer and meticillin-resistant Staphylococcus aureus and nine family members (n = 18). Framework analysis was used to analyse the data. Patients and family members of patients with advanced cancer either admitted to the specialist palliative care unit or receiving palliative care in the hospital setting, who had a laboratory confirmed diagnosis of meticillin-resistant Staphylococcus aureus colonisation, were considered for inclusion in the study. Four themes were identified using framework analysis: reactions to receiving a meticillin-resistant Staphylococcus aureus diagnosis, the need for effective communication of the meticillin-resistant Staphylococcus aureus diagnosis, the enigmatic nature of meticillin-resistant Staphylococcus aureus, and lessons to guide the future care of meticillin-resistant Staphylococcus aureus patients. This article indicates that meticillin-resistant Staphylococcus aureus can have a significant impact on advanced cancer patients and their families. This impact may be underestimated, but early and careful face-to-face explanation about meticillin-resistant Staphylococcus aureus and its implications can help patients and their families to cope better with it. These findings should be considered when developing policy relating to meticillin-resistant Staphylococcus aureus management and infection control in specialist palliative care settings. © The Author(s) 2015.

  19. Important questions asked by family members of intensive care unit patients.

    Science.gov (United States)

    Peigne, Vincent; Chaize, Marine; Falissard, Bruno; Kentish-Barnes, Nancy; Rusinova, Katerina; Megarbane, Bruno; Bele, Nicolas; Cariou, Alain; Fieux, Fabienne; Garrouste-Orgeas, Maite; Georges, Hugues; Jourdain, Merce; Kouatchet, Achille; Lautrette, Alexandre; Legriel, Stephane; Regnier, Bernard; Renault, Anne; Thirion, Marina; Timsit, Jean-Francois; Toledano, Dany; Chevret, Sylvie; Pochard, Frédéric; Schlemmer, Benoît; Azoulay, Elie

    2011-06-01

    Relatives often lack important information about intensive care unit patients. High-quality information is crucial to help relatives overcome the often considerable situational stress and to acquire the ability to participate in the decision-making process, most notably regarding the appropriate level of care. We aimed to develop a list of questions important for relatives of patients in the intensive care unit. This was a multicenter study. Questions asked by relatives of intensive care unit patients were collected from five different sources (literature, panel of 28 intensive care unit nurses and physicians, 1-wk survey of nurses and 1-wk survey of physicians in 14 intensive care units, and in-depth interviews with 14 families). After a qualitative analysis (framework approach and thematic analysis), questions were rated by 22 relatives and 14 intensive care unit physicians, and the ratings were analyzed using principal component analysis and hierarchical clustering. The five sources produced 2,135 questions. Removal of duplicates and redundancies left 443 questions, which were distributed among nine predefined domains using a framework approach ("diagnosis," "treatment," "prognosis," "comfort," "interaction," "communication," "family," "end of life," and "postintensive care unit management"). Thematic analysis in each domain led to the identification of 46 themes, which were reworded as 46 different questions. Ratings by relatives and physicians showed that 21 of these questions were particularly important for relatives of intensive care unit patients. This study increases knowledge about the informational needs of relatives of intensive care unit patients. This list of questions may prove valuable for both relatives and intensive care unit physicians as a tool for improving communication in the intensive care unit.

  20. [National socialist violent measures against psychiatric patients: ways of coping by family members].

    Science.gov (United States)

    Delius, P

    1991-03-01

    In the cause of an historical study dealing with the closing of an ancient psychiatric hospital in Luebeck during the 2nd world war the infrafamilial structures of the deported patients were explored. Among 136 clinical reports 42 cases were found in which families succeeded to get into contact with deported patients, in three cases their efforts to have them discharged were successful. Stress was laid on the exploration of 12 relatives of deported or murdered psychiatric patients. The interviews were structured following the "oral history" concept and psychological interpretation was added. Focussing on infrafamiliar coping processes which were developed facing the NS-propaganda it was found that working-class people tended to see the victim in an idealized role. They showed a strong projective defence remembering Psychiatry as an integral part of nazi-system. Others saw their relatives as victims of war in general. Some of the relatives tried to repress the existence of surviving patients for a long time, a smaller group clinged to the idea of Euthanasia. Remarkable were the deep effects of eugenic nazi-propaganda on the following generation. The national socialistic violence concerning their fathers or mothers was often a total "tabu" and they nowadays still fear to get into contact with Psychiatry being aware of "suffering" from the same "bad blood" as their murdered relatives. Dealing with patients' resistance to therapeutic efforts in gerontopsychiatric wards their heritage of the nazi ear should be taken into account.

  1. The relationship between mental health workers and family members

    NARCIS (Netherlands)

    van de Bovenkamp, H.M.; Trappenburg, M.J.

    2010-01-01

    Objective To study the relationship between family members and mental health care workers to learn more about the support available to family members of mental health patients. Methods Eighteen interviews were conducted with family members, seven with professionals and two with patients.

  2. Factors Affecting Communication Patterns between Oncology Staff and Family Members of Deceased Patients: A Cross-Sectional Study.

    Science.gov (United States)

    Granot, Tal; Gordon, Noa; Perry, Shlomit; Rizel, Shulamith; Stemmer, Salomon M

    Perceptions of the role of oncology medical staff in supporting bereaved families have evolved with the transition to interdisciplinary cancer care. We investigated the interactions between oncology professionals and bereaved families. This cross-sectional study involved all oncology medical staff at the Davidoff Center. Participants were given a questionnaire relating to bereavement follow-up. Responses were measured using a 5-point Likert scale. Of 155 staff members, 107 filled questionnaires with social workers (7%), psychologists (4%), or unspecified (8%); 85% were Jewish, and 60% had ≥10 years of oncology experience. Most respondents thought that contacting bereaved families was important (73%), and that it provided closure for staff (79%); 41% indicated that they contacted >50% of the families of their deceased patients. Contacting bereaved families was considered the responsibility of the physicians (90%), nurses (84%), or social workers (89%). The main barriers to contacting bereaved families were emotional overload (68%) and lack of time (63%); 60% indicated a need for additional communication tools for bereavement follow-up. In a multivariate analysis, profession (physician vs. nurse), primary workplace (outpatient setting vs. other), and self-defined religion were significant variables with respect to the perceived importance of contacting bereaved families and to actually contacting them. Other factors (e.g., age, gender) were non-significant. Perspectives regarding bereavement actions differ significantly across medical professions, work settings, and self-defined religions. Additional guidance and education regarding bereavement actions is warranted.

  3. Bringing Value-Based Perspectives to Care: Including Patient and Family Members in Decision-Making Processes.

    Science.gov (United States)

    Kohler, Graeme; Sampalli, Tara; Ryer, Ashley; Porter, Judy; Wood, Les; Bedford, Lisa; Higgins-Bowser, Irene; Edwards, Lynn; Christian, Erin; Dunn, Susan; Gibson, Rick; Ryan Carson, Shannon; Vallis, Michael; Zed, Joanna; Tugwell, Barna; Van Zoost, Colin; Canfield, Carolyn; Rivoire, Eleanor

    2017-03-06

    Recent evidence shows that patient engagement is an important strategy in achieving a high performing healthcare system. While there is considerable evidence of implementation initiatives in direct care context, there is limited investigation of implementation initiatives in decision-making context as it relates to program planning, service delivery and developing policies. Research has also shown a gap in consistent application of system-level strategies that can effectively translate organizational policies around patient and family engagement into practice. The broad objective of this initiative was to develop a system-level implementation strategy to include patient and family advisors (PFAs) at decision-making points in primary healthcare (PHC) based on wellestablished evidence and literature. In this opportunity sponsored by the Canadian Foundation for Healthcare Improvement (CFHI) a co-design methodology, also well-established was applied in identifying and developing a suitable implementation strategy to engage PFAs as members of quality teams in PHC. Diabetes management centres (DMCs) was selected as the pilot site to develop the strategy. Key steps in the process included review of evidence, review of the current state in PHC through engagement of key stakeholders and a co-design approach. The project team included a diverse representation of members from the PHC system including patient advisors, DMC team members, system leads, providers, Public Engagement team members and CFHI improvement coaches. Key outcomes of this 18-month long initiative included development of a working definition of patient and family engagement, development of a Patient and Family Engagement Resource Guide and evaluation of the resource guide. This novel initiative provided us an opportunity to develop a supportive system-wide implementation plan and a strategy to include PFAs in decision-making processes in PHC. The well-established co-design methodology further allowed us to

  4. A systematic review of basic life support training targeted to family members of high-risk cardiac patients.

    Science.gov (United States)

    Cartledge, Susie; Bray, Janet E; Leary, Marion; Stub, Dion; Finn, Judith

    2016-08-01

    Targeting basic life support (BLS) training to bystanders who are most likely to witness an out of hospital cardiac arrest (OHCA) is an important public health intervention. We performed a systematic review examining the evidence of the effectiveness of providing BLS training to family members of high-risk cardiac patients. A search of Ovid MEDLINE, CINAL, EMBASE, Informit, Cochrane Library, Web of Science, Scopus, ERIC and ProQuest Dissertations and Theses Global was conducted. We included all studies training adult family members of high-risk cardiac patients regardless of methods used for cardiopulmonary resuscitation (CPR) or BLS training. Two reviewers independently extracted data and evaluated the quality of evidence using GRADE (Grades of Recommendation, Assessment, Development and Evaluation). We included 26 of the 1172 studies identified. The majority of studies were non-randomised controlled trials (n=18), of very low to moderate quality. Currently, there is insufficient evidence to indicate a benefit of this intervention for patients; largely because of low numbers of OHCA events and high loss to follow-up. However, the majority of trained individuals were able to competently perform BLS skills, reported a willingness to use these skills and experienced lower anxiety. Whilst there is no current evidence for improvement in patient outcomes from targeted BLS training for family members, this group are willing and capable to learn these skills. Future research may need to examine longer periods of follow-up using alternate methods (e.g. cardiac arrest registries), and examine the effectiveness of training in the modern era. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

  5. Identifying and Managing Undue Influence From Family Members in End-of-Life Decisions for Patients With Advanced Cancer.

    Science.gov (United States)

    Baker, Francis X; Gallagher, Colleen M

    2017-10-01

    Undue influence from family members of patients with advanced cancer remains a serious ethical problem in end-of-life decision making. Despite the wealth of articles discussing the problem of undue influence, little has been written by way of practical guidance to help clinicians identify and effectively manage situations of undue influence. This article briefly lays out how to identify and manage situations of undue influence sensitively and effectively. We explain how undue influence may present itself in the clinic and distinguish it from ethically permissible expressions of relational autonomy. In addition, we lay out a process by which any clinician suspecting undue influence may gather additional information and, if necessary, conduct a family meeting to address the undue influence. It is our hope that by providing clinicians at all levels of patient care with such guidance, they will feel empowered to respond to cases of undue influence when they arise.

  6. Factors Affecting Communication Patterns between Oncology Staff and Family Members of Deceased Patients: A Cross-Sectional Study.

    Directory of Open Access Journals (Sweden)

    Tal Granot

    Full Text Available Perceptions of the role of oncology medical staff in supporting bereaved families have evolved with the transition to interdisciplinary cancer care. We investigated the interactions between oncology professionals and bereaved families.This cross-sectional study involved all oncology medical staff at the Davidoff Center. Participants were given a questionnaire relating to bereavement follow-up. Responses were measured using a 5-point Likert scale.Of 155 staff members, 107 filled questionnaires with 50% of the families of their deceased patients. Contacting bereaved families was considered the responsibility of the physicians (90%, nurses (84%, or social workers (89%. The main barriers to contacting bereaved families were emotional overload (68% and lack of time (63%; 60% indicated a need for additional communication tools for bereavement follow-up. In a multivariate analysis, profession (physician vs. nurse, primary workplace (outpatient setting vs. other, and self-defined religion were significant variables with respect to the perceived importance of contacting bereaved families and to actually contacting them. Other factors (e.g., age, gender were non-significant.Perspectives regarding bereavement actions differ significantly across medical professions, work settings, and self-defined religions. Additional guidance and education regarding bereavement actions is warranted.

  7. Relationship between the depression status of patients with resectable non-small cell lung cancer and their family members in China.

    Science.gov (United States)

    Wu, Xian-Ning; Su, Dan; Li, Hui-Ping; Wang, Wei-Li; Wu, Wei-Qin; Yang, Ya-Juan; Yu, Feng-Lei; Zhang, Jing-Ping

    2013-10-01

    Less work on depression status has been done with family members of patients with non-small cell lung cancer (NSCLC). This study investigated depression status of patients and their family members; and the relationship of the depression status between these two groups. This cross-sectional study enrolled 194 patients diagnosed with non-small cell lung cancer as well as their family members. In this study, a self-administered General Information Questionnaire was used to collect general information and the Self-rating Depression Scale (SDS) to assess depression status. Linear correlation analysis was used to probe the relationship of the depression status between patients and their family members. Of the 194 patients, 148 (76.3%) showed symptoms of depression. 148 (76.3%) family members had depression symptoms. The severity of depression in patients was positively correlated with that of family members (r = 0.577, p family members suffered depression, and the two were correlated. A prospective study might prove helpful in determining the real relationship existing between the two groups' mental status and whether early detection and intervention might ameliorate this current situation. Copyright © 2013 Elsevier Ltd. All rights reserved.

  8. Family member accompaniment to routine medical visits is associated with better self-care in heart failure patients.

    Science.gov (United States)

    Cené, Crystal W; Haymore, Laura Beth; Lin, Feng-Chang; Laux, Jeffrey; Jones, Christine Delong; Wu, Jia-Rong; DeWalt, Darren; Pignone, Mike; Corbie-Smith, Giselle

    2015-03-01

    To examine the association between frequency of family member accompaniment to medical visits and heart failure (HF) self-care maintenance and management and to determine whether associations are mediated through satisfaction with provider communication. Cross-sectional survey of 150 HF patients seen in outpatient clinics. HF self-care maintenance and management were assessed using the Self-Care of Heart Failure Index. Satisfaction with provider communication was assessed using a single question originally included in the American Board of Internal Medicine Patient Satisfaction Questionnaire. Frequency of family member accompaniment to visits was assessed using a single-item question. We performed regression analyses to examine associations between frequency of accompaniment and outcomes. Mediation analysis was conducted using MacKinnon's criteria. Overall, 61% reported accompaniment by family members to some/most/every visit. Accompaniment to some/most/every visit was associated with higher self-care maintenance (β = 6.4, SE 2.5; p = 0.01) and management (β = 12.7, SE 4.9; p = 0.01) scores. Satisfaction with provider communication may mediate the association between greater frequency of accompaniment to visits and self-care maintenance (1.092; p = 0.06) and self-care management (1.428; p = 0.13). Accompaniment to medical visits is associated with better HF self-care maintenance and management, and this effect may be mediated through satisfaction with provider communication. © The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav.

  9. Patients' and their family members' experiences of participation in care following an acute exacerbation in chronic obstructive pulmonary disease: A phenomenological-hermeneutic study.

    Science.gov (United States)

    Andersen, Ingrid Charlotte; Thomsen, Thora Grothe; Bruun, Poul; Bødtger, Uffe; Hounsgaard, Lise

    2017-12-01

    To explore the experiences of patients with chronic obstructive pulmonary disease and their family members relating both to participation in care during hospitalisation for an acute exacerbation in chronic obstructive pulmonary disease, and to the subsequent day-to-day care at home. When recovering from an exacerbation, the challenges associated with an unpredictable health condition dominate everyday life for patients and can involve their family members. Proper patient and family participation in care during discharge and follow-up can help patients to improve self-management. However, knowledge of the significance of patient and family participation for recovery and subsequent everyday life is still limited. This study adopted a longitudinal design informed by ethnographic fieldwork principles. Participant observations and interviews with 15 patients and 12 family members were conducted on a Danish hospital ward and twice at the participants' homes. A phenomenological-hermeneutic approach inspired by Ricoeur's theory of interpretation guided the data analysis. Participation in care was perceived as valuable, but could be associated with tensions and increased uncertainty. While patients mostly demonstrated a reactive approach to care, family members strived to be more proactive. In hospital, preparing for discharge included an effort to find a balance between powerlessness and influence during interactions with healthcare professionals. At home, managing further recovery and self-management were characterised by navigating between mutual pressure and consideration within the family. Family members play an important role in ensuring that patients are seen, heard and understood, but want to be acknowledged more by healthcare professionals. Appropriate interactions with healthcare professionals are crucial in order to support discharge and daily self-management. Knowledge of the challenges that patients with chronic obstructive pulmonary disease and their family

  10. Attachment figures when death is approaching: a study applying attachment theory to adult patients' and family members' experiences during palliative home care.

    Science.gov (United States)

    Milberg, Anna; Friedrichsen, Maria

    2017-07-01

    Attachment theory is currently receiving much attention in relation to how adults cope with severe illness. The study aims were using the experiences of patients and family members to explore attachment figures (a central concept within the theory) during palliative home care. Twelve patients and 14 family members were interviewed during ongoing palliative home care. The interviews were analysed using qualitative content analysis. Four types of attachment figures were identified: (i) family and friends, (ii) health care practitioners, (iii) pets and (iv) God. Both non-physical and physical contact with the attachment figures facilitated a sense of security. In addition, the patient/family members and their attachment figures were described by some as a "we", and when one part of the "we" felt insecure, this made the other also feel insecure. The patients' unstable and progressing illnesses constituted a threat to the patients' and family members' sense of security. The availability of the attachment figures made them feel secure, and they could then divert their attention from the patients' illnesses to other things in everyday life, e.g. socialising with family and friends. Some family members also had to cope with the loss of their own attachment figure, when the patient, who had previously been a source of security for them, was no longer able to offer protection and comfort due to the progression of the illness. Important aspects of attachment figures in the end-of-life context were identified, and their clinical implications will be discussed.

  11. Sputum transcriptomics reveal upregulation of IL-1 receptor family members in patients with severe asthma

    NARCIS (Netherlands)

    Rossios, Christos; Pavlidis, Stelios; Hoda, Uruj; Kuo, Chih-Hsi; Wiegman, Coen; Russell, Kirsty; Sun, Kai; Loza, Matthew J.; Baribaud, Frederic; Durham, Andrew L.; Ojo, Oluwaseun; Lutter, Rene; Rowe, Anthony; Bansal, Aruna; Auffray, Charles; Sousa, Ana; Corfield, Julie; Djukanovic, Ratko; Guo, Yike; Sterk, Peter J.; Chung, Kian Fan; Adcock, Ian M.

    2018-01-01

    Sputum analysis in asthmatic patients is used to define airway inflammatory processes and might guide therapy. We sought to determine differential gene and protein expression in sputum samples from patients with severe asthma (SA) compared with nonsmoking patients with mild/moderate asthma. Induced

  12. Relationship of Health Literacy of Heart Failure Patients and Their Family Members on Heart Failure Knowledge and Self-Care.

    Science.gov (United States)

    Wu, Jia-Rong; Reilly, Carolyn M; Holland, James; Higgins, Melinda; Clark, Patricia C; Dunbar, Sandra B

    2017-02-01

    We explored the relationships among patients' and family members' (FMs) health literacy, heart failure (HF) knowledge, and self-care behaviors using baseline data from HF patients and their FMs ( N = 113 pairs) in a trial of a self-care intervention. Measures included Rapid Estimate of Adult Literacy in Medicine, Atlanta HF Knowledge Test, a heart failure Medication Adherence Scale, and sodium intake (24-hr urine and 3-day food record). Patients with low health literacy (LHL) were more likely to have lower HF knowledge ( p < .001) and trended to poorer medication adherence ( p = .077) and higher sodium intake ( p = .072). When FMs had LHL, FMs were more likely to have lower HF knowledge ( p = .001) and patients trended toward higher sodium intake ( p = .067). When both patients and FMs had LHL, lowest HF knowledge and poorest medication adherence were observed ( p < .027). The health literacy of both patient and FM needs to be considered when designing interventions to foster self-care.

  13. Radiation protection to the family and the members of the public following administration of a radiopharmaceutical to a patient

    International Nuclear Information System (INIS)

    Gardin, I.; Chomant, J.; Vera, P.

    2001-01-01

    This paper reviews the published data relating to radiation hazards to the family and close friends or the members of the public, associated with nuclear medicine patients. The new annual dose limit of 1 mSv proposed by the ICRP for members of the public and the concept of dose constraints should modify the French legislation and the radioprotection guidance. Dose constraints are set prospectively and are not expected to be exceeded. They are no legal dose limits. They can be higher in the case of the family and close friends than the dose limit of 1 mSv. The European Commission proposes dose constraints values of 3 mSv for the family and close friends (adults) and 0.3 mSv for the members of the public, as the United Kingdom's recommendations are respectively 5 mSv and 1 mSv. For diagnostic studies, the quantities of radioactivity currently administered do not necessitate any special precautions or restrictions to be place on the patient. The main exception was found in the situation of an out patient given 111 In who had to look after a fretful infant with close contact time of 9 hours per day. For breast-feeding, comprehensive set of recommendations, including no interruption or interruption during only a few hours were proposed to ensure that the effective dose to the infant does not exceed 1 mSv. Nevertheless, as a precaution, breast-feeding interruption should be recommended, whatever the radiopharmaceutical, or if possible, to defer the medical exploration. The main radiation protection problem occurs for therapeutic treatment with gamma ray emitters such as 131 I for the treatment of thyroid pathology. There is a range of published recommendations for limiting the exposure of close friends and the members of the public. These advises include private and public transports, return to work, sleeping with partner and close contact with children. The recommendations proposed by the European Commission for the members of the public are quite restrictive if

  14. Radiation Dose to Family Member of Hospitalized Patient Receiving I-131 Therapy for Thyroid Cancer: Case Study

    International Nuclear Information System (INIS)

    Tuntawiroon, M; Chaudakshetrin, P; Sritongkul N; Thongprapal, T

    2009-07-01

    Full text: During high-dose I-131 therapy, hospitalized patient who is unable to walk to the bathroom is at risk of radiation burden to comforter from excreted urine. Foley catheter is usually placed in the patient before I-131 administration. The urine was collected and housed in lead shielding, emptied every 4 to 6 hours on the first day, and every 8 to 10 hours on subsequent days. After specific instructions with regard to radiation safety, family member designed as the caregiver of patient was provided an electronic personal dosimeter to directly measure radiation dose for three days in isolated hospitalization and two more weeks at home. The caregiver recorded time spent in contact with the patient and activities performed during these times. Total accumulative dose for 16 days was 650 μSv of which 44% (288 μSv) was from the first 24 hours and more than 70% (462 μSv) during the first 72 hours, and about 25% (162 μSv) from emptying urine bags. Most of the dose received (488 μSv) was from attending time spent in the vicinity of the patients. However, this was not exceeding the constraints of 1 mSv/y and well below the limit of 5 mSv in any one year for exposed caregiver and comforter

  15. Caregiver burden and its determinants among the family members of patients with dementia in Iran

    Directory of Open Access Journals (Sweden)

    Ibrahim Abdollahpour

    2012-01-01

    Full Text Available Background: "Caregiver Burden" is actually an expression addressing the adverse consequences of the care provided to the patients′ with dementia. Review of the previous studies reveals a higher rate of depression and anxiety among the caregivers as compared to the general population. This study has been designed to evaluate the caregiver burden and then the factors influencing it among caregivers of patients with dementia in Iran. Methods: In this cross-sectional study, 153 patients and their caregivers registered in the Memory Clinic in Roozbeh Hospital and Iranian Alzheimer Association (IAA were included. Data collection scales were Iranian Version of Caregiver Burden, Global Deterioration scale and Barthel index. Multiple linear regression model was applied to determine the factors influencing the caregiver burden. Results: Out of the 153 patients, 90 were male. The mean age calculated for the patients and the caregivers was 77.1 and 53, respectively. The mean of caregiver burden was 55.2. Three variables, gender (P<0.01, education of the patient (P<0.005 for illiterate patients, and the patient′s dependence on the caregiver for his/her daily tasks (P<0.000 were correlated with a high level of burden on the caregiver. The recommended model explains 0.664% of the variance of the outcome variable. Conclusion: Presence of either moderate or higher levels of burden (58-116 in more than 50% of the caregivers of these patients′ highlights the need for more attention from health policy makers in Iran. Promoting the level of caregivers′ quality of life along with enabling the patients in performing their daily tasks in order to reduce the imposed burden on caregivers′ is recommended.

  16. How does information influence hope in family members of traumatic coma patients in intensive care unit?

    NARCIS (Netherlands)

    F.J. van Zuuren; Prof. Dr. M.S.H. Duijnstee; T. Defloor; M.H.F. Grypdonck; S.T.L. Verhaeghe

    2007-01-01

    AIMS: To assess the interplay between hope and the information provided by health care professionals. BACKGROUND: Earlier research learned that hope is crucial for relatives of traumatic coma patients. Also it has been reported that the need for information is extremely important for relatives of

  17. Psychological response of family members of patients hospitalised for influenza A/H1N1 in Oaxaca, Mexico.

    Science.gov (United States)

    Elizarrarás-Rivas, Jesús; Vargas-Mendoza, Jaime E; Mayoral-García, Maurilio; Matadamas-Zarate, Cuauhtémoc; Elizarrarás-Cruz, Anaid; Taylor, Melanie; Agho, Kingsley

    2010-12-03

    The A/H1N1 pandemic originated in Mexico in April 2009, amid high uncertainty, social and economic disruption, and media reports of panic. The aim of this research project was to evaluate the psychological response of family primary caregivers of patients hospitalised in the Intensive Care Unit (ICU) with suspected influenza A/H1N1 to establish whether there was empirical evidence of high adverse psychological response, and to identify risk factors for such a response. If such evidence was found, a secondary aim was to develop a specific early intervention of psychological support for these individuals, to reduce distress and possibly lessen the likelihood of post-traumatic stress disorder (PTSD) in the longer term. Psychological assessment questionnaires were administered to the family primary caregivers of patients hospitalised in the ICU in the General Hospital of Zone 1 of the Mexican Institute for Social Security (IMSS), Oaxaca, Mexico with suspected influenza A/H1N1, during the month of November 2009. The main outcome measures were ratings of reported perceived stress (PSS-10), depression (CES-D), and death anxiety (DAQ). Data were subjected to simple and multiple linear regression analysis to identify risk factors for adverse psychological response. Elevated levels of perceived stress and depression, compared to population normative data, and moderate levels of death anxiety were noted. Levels of depression were similar to those found in comparable studies of family members of ICU patients admitted for other conditions. Multiple regression analysis indicated that increasing age and non-spousal family relationship were significantly associated with depression and perceived stress. Female gender, increasing age, and higher levels of education were significantly associated with high death anxiety. Comparisons with data collected in previous studies in the same hospital ICU with groups affected by a range of other medical conditions indicated that the

  18. US Healthcare Experiences of Hispanic Patients with Diabetes and Family Members: A Qualitative Analysis.

    Science.gov (United States)

    Amirehsani, Karen A; Hu, Jie; Wallace, Debra C; Silva, Zulema A; Dick, Sarah; West-Livingston, Lauren N; Hussami, Christina R

    2017-01-01

    Hispanics in the United States experience significant health disparities. Using focus groups conducted in Spanish, we explored the perspectives of 172 Hispanic adults regarding their healthcare experiences. Many participants were women (64.5%) and primarily from Mexico (80%). Four major qualitative themes emerged: (a) provide us with information, (b) want attentive and respectful relationships, (c) want better care, and (d) perceived discrimination. Suboptimal patient-provider interactions were described. Research is needed to explore interventions that address these issues. Incorporating person-centered care principles and practices such as clear and understandable communication, culturally competent care, and customer service skills may benefit provider interactions with Hispanics.

  19. "Maybe They Don't Even Know That I Exist": Challenges Faced by Family Members and Friends of Patients with Advanced Kidney Disease.

    Science.gov (United States)

    O'Hare, Ann M; Szarka, Jackie; McFarland, Lynne V; Vig, Elizabeth K; Sudore, Rebecca L; Crowley, Susan; Reinke, Lynn F; Trivedi, Ranak; Taylor, Janelle S

    2017-06-07

    Family members and friends of patients with advanced chronic illness are increasingly called on to assist with ever more complex medical care and treatment decisions arising late in the course of illness. Our goal was to learn about the experiences of family members and friends of patients with advanced kidney disease. As part of a study intended to identify opportunities to enhance advance care planning, we conducted semistructured interviews at the Veterans Affairs Puget Sound Health Care System with 17 family members and friends of patients with advanced kidney disease. Interviews were conducted between April of 2014 and May of 2016 and were audiotaped, transcribed, and analyzed inductively using grounded theory to identify emergent themes. The following three themes emerged from interviews with patients' family members and friends: ( 1 ) their roles in care and planning were fluid over the course of the patient's illness, shaped by the patients' changing needs and their readiness to involve those close to them; ( 2 ) their involvement in patients' care was strongly shaped by health care system needs. Family and friends described filling gaps left by the health care system and how their involvement in care and decision-making was at times constrained and at other times expected by providers, depending on system needs; and ( 3 ) they described multiple sources of tension and conflict in their interactions with patients and the health care system, including instances of being pitted against the patient. Interviews with family members and friends of patients with advanced kidney disease provide a window on the complex dynamics shaping their engagement in patients' care, and highlight the potential value of offering opportunities for engagement throughout the course of illness. Copyright © 2017 by the American Society of Nephrology.

  20. Dying in the Hospital: Perspectives of family members.

    Science.gov (United States)

    Dose, Ann Marie; Carey, Elise C; Rhudy, Lori M; Chiu, Yichen; Frimannsdottir, Katrin; Ottenberg, Abigale L; Koenig, Barbara A

    2015-01-01

    Although most patients express a preference to die at home, many (over 30 percent) still die in hospital. This study's purpose was to explore the experience of hospital death from the perspective of patients' family members. interviews were conducted with family members of patients who had died at hospitals affiliated with a large tertiary referral centre in the United States. Content analysis was used to analyze findings. We interviewed 30 family members by phone. Themes were arranged by time frame: before death, time of death, and after death. Families do not interpret clinical cues leading up to death in the same way healthcare providers do; families need clear and direct explanations from providers. Clinicians should assess patient and family understandings of prognosis and communicate clearly and directly. Family members value being with their loved one at the time of death, and they value spending time with the body after death; this should be facilitated in clinical practice.

  1. Exploring the stigma related experiences of family members of ...

    African Journals Online (AJOL)

    Celenkosini Thembelenkosini Nxumalo

    a cycle of disability on the part of the patient and family. Purpose: To explore the stigma .... prevention of stigmatisation of people with mental illness and their families in rural ... as a family member's accounts of stigma related feelings, situations or ..... ishment from the family as a reason for the bad behaviour. The participants ...

  2. Nuclear expression of Lyn, a Src family kinase member, is associated with poor prognosis in renal cancer patients.

    Science.gov (United States)

    Roseweir, Antonia K; Qayyum, Tahir; Lim, Zhi; Hammond, Rachel; MacDonald, Alasdair I; Fraser, Sioban; Oades, Grenville M; Aitchison, Michael; Jones, Robert J; Edwards, Joanne

    2016-03-16

    8000 cases of renal cancer are diagnosed each year in the UK, with a five-year survival rate of 50%. Treatment options are limited; a potential therapeutic target is the Src family kinases (SFKs). SFKs have roles in multiple oncogenic processes and promote metastases in solid tumours. The aim of this study was to investigate SFKs as potential therapeutic targets for clear cell renal cell carcinoma (ccRCC). SFKs expression was assessed in a tissue microarray consisting of 192 ccRCC patients with full clinical follow-up. SFK inhibitors, dasatinib and saracatinib, were assessed in early ccRCC cell lines, 786-O and 769-P and a metastatic ccRCC cell line, ACHN (± Src) for effects on protein expression, apoptosis, proliferation and wound healing. High nuclear expression of Lyn and the downstream marker of activation, paxillin, were associated with decreased patient survival. Conversely, high cytoplasmic expression of other SFK members and downstream marker of activation, focal adhesion kinase (FAK) were associated with increased patient survival. Treatment of non-metastatic 786-O and 769-P cells with dasatinib, dose dependently reduced SFK activation, shown via SFK (Y(419)) and FAK (Y(861)) phosphorylation, with no effect in metastatic ACHN cells. Dasatinib also increased apoptosis, while decreasing proliferation and migration in 786-O and 769-P cell lines, both in the presence and absence of Src protein. Our data suggests that nuclear Lyn is a potential therapeutic target for ccRCC and dasatinib affects cellular functions associated with cancer progression via a Src kinase independent mechanism.

  3. A practical guideline for the release of patients treated by I-131 based on Monte Carlo dose calculations for family members

    International Nuclear Information System (INIS)

    Han, Eun Young; Lee, Choonsik; Mcguire, Lynn; Bolch, Wesley E

    2014-01-01

    We recently published effective doses per time-integrated activity (mSv MBq −1  s −1 ) for paediatric and adult family members exposed to an adult patient released from hospital following I-131 therapy. In the present study, we intend to provide medical physicists with a methodology to estimate family member effective dose in daily clinical practice because the duration of post-radiation precautions for the patient–family member exposure scenario has not been explicitly delineated based on the effective dose. Four different exposure scenarios are considered in this study including (1) a patient and a family member standing face to face, (2) a patient and a family member lying side by side, (3) an adult female patient holding a newborn child to her chest and (4) a one-year-old child standing on the lap of an adult female patient following her I-131 therapy. The results of this study suggest that an adult female hyperthyroidism (HT) patient who was administered with 740 MBq should keep a distance of 100 cm from a 15-year-old child for six days and the same distance from other adults for seven days. The HT female patient should avoid holding a newborn against her chest for at least 16 days following hospital discharge, and a female patient treated with 5550 MBq for differentiated thyroid cancer should not hold her newborn child for at least 15 days following hospital discharge. This study also gives dose coefficients allowing one to predict age-specific effective doses to family members given the measured dose rate (mSv h −1 ) of the patient. In conclusion, effective dose-based patient release criteria with a modified NRC two-component model provide a site medical physicist with less restrictive and age-specific radiation precaution guidance as they fully consider a patient’s iodine biokinetics and photon attenuation within both the patient and the exposed family members. (note)

  4. Levels of {sup 131}I Activity in Patients to Enable Hospital Discharge, Based on External Exposure of Family Members of the Patient in Japan

    Energy Technology Data Exchange (ETDEWEB)

    Koshida, K.; Nishizawa, K.; Koga, S.; Orito, T

    1999-07-01

    The activity levels for discharge from hospital of patients treated with {sup 131}I in Japan are described. The level was determined by considering the public annual dose limit in Japan of 1 mSv and the possible exposure of family members with whom the patients were in daily contact. All analyses are based on a partner, where both the partner and the children will be subject to exposure. The external exposure was calculated by using the data on the distance between the patient and family members, the length of the time spent at each distance, and each member's age. It was assumed that the mother must continue to take responsibility for care of children during the period that she is radioactive. The conclusions of this work are that a maximum residual {sup 131}I radioactivity of <97 MBq, with a distance from the patient in bed greater than 50 cm and the ages of patient's children all over 1 year, will be required to ensure that the maximum dose to any contact will not exceed 1 mSv. More than 50 cm distance suggests either an unmarried housewife or the partner sleeping in an adjacent room or twin beds. No restriction is needed in respect of external exposure for patients with residual radioactivity of 42 MBq, although levels lower than this may be required where there is a risk of contamination, e.g. due to urinary incontinence. This conflicts with recommended activity levels for discharge (ICRP 25) of 560 MBq (for a dose limit of 5 mSv). The findings of this work are only directly relevant for the age range under 55 years. No account was taken in this paper of internal exposure from internal pathways. (author)

  5. Levels of 131I Activity in Patients to Enable Hospital Discharge, Based on External Exposure of Family Members of the Patient in Japan

    International Nuclear Information System (INIS)

    Koshida, K.; Nishizawa, K.; Koga, S.; Orito, T.

    1999-01-01

    The activity levels for discharge from hospital of patients treated with 131 I in Japan are described. The level was determined by considering the public annual dose limit in Japan of 1 mSv and the possible exposure of family members with whom the patients were in daily contact. All analyses are based on a partner, where both the partner and the children will be subject to exposure. The external exposure was calculated by using the data on the distance between the patient and family members, the length of the time spent at each distance, and each member's age. It was assumed that the mother must continue to take responsibility for care of children during the period that she is radioactive. The conclusions of this work are that a maximum residual 131 I radioactivity of <97 MBq, with a distance from the patient in bed greater than 50 cm and the ages of patient's children all over 1 year, will be required to ensure that the maximum dose to any contact will not exceed 1 mSv. More than 50 cm distance suggests either an unmarried housewife or the partner sleeping in an adjacent room or twin beds. No restriction is needed in respect of external exposure for patients with residual radioactivity of 42 MBq, although levels lower than this may be required where there is a risk of contamination, e.g. due to urinary incontinence. This conflicts with recommended activity levels for discharge (ICRP 25) of 560 MBq (for a dose limit of 5 mSv). The findings of this work are only directly relevant for the age range under 55 years. No account was taken in this paper of internal exposure from internal pathways. (author)

  6. Sex, Age, and Race/Ethnicity Do Not Modify the Effectiveness of a Diet Intervention among Family Members of Hospitalized Cardiovascular Disease Patients

    Science.gov (United States)

    Mochari-Greenberger, Heidi; Terry, Mary Beth; Mosca, Lori

    2011-01-01

    Objective: To determine whether effectiveness of a diet intervention for family members of cardiovascular disease patients varies by participant sex, race/ethnicity, or age because these characteristics have been associated with unique barriers to diet change. Design: Randomized controlled trial. Setting and Participants: University medical…

  7. Reducing health risk in family members of patients with type 2 diabetes: views of first degree relatives

    Directory of Open Access Journals (Sweden)

    O'Sullivan Bernadette

    2009-12-01

    Full Text Available Abstract Background Patients with type 2 diabetes can have an important role in discussing health risk within families. This study aimed to establish the acceptability to first degree relatives towards their relative with type 2 diabetes intervening as health promoters in their own families, using the Health Belief Model as a theoretical framework for evaluation. Methods Cross-sectional questionnaire design. Survey questionnaire for first degree relative (sibling or child mailed to a random sample of patients with type 2 diabetes registered with an urban hospital diabetes clinic (n = 607 eligible patients. Patients were asked to pass on questionnaires to one to two first degree relatives. Results Questionnaires were returned from 257 families (42% response rate with two responses provided by 107 families (a total of 364 questionnaires. The majority (94% of first degree relatives of patients with type 2 diabetes would like to be informed about reducing their risk. Half (48% of respondents reported being spoken to by a relative with type 2 diabetes about their risk of diabetes. Those spoken to were more likely to see themselves at risk of diabetes, to worry about developing diabetes and to view diabetes as a serious condition. Conclusions A role for patients with type 2 diabetes in discussing health risk in their family appears to be acceptable to many relatives. Discussion of risk and interventions to reduce health risk with their relatives should be encouraged in patients with type 2 diabetes.

  8. Reducing health risk in family members of patients with type 2 diabetes: views of first degree relatives.

    LENUS (Irish Health Repository)

    Whitford, David L

    2009-01-01

    BACKGROUND: Patients with type 2 diabetes can have an important role in discussing health risk within families. This study aimed to establish the acceptability to first degree relatives towards their relative with type 2 diabetes intervening as health promoters in their own families, using the Health Belief Model as a theoretical framework for evaluation. METHODS: Cross-sectional questionnaire design. Survey questionnaire for first degree relative (sibling or child) mailed to a random sample of patients with type 2 diabetes registered with an urban hospital diabetes clinic (n = 607 eligible patients). Patients were asked to pass on questionnaires to one to two first degree relatives. RESULTS: Questionnaires were returned from 257 families (42% response rate) with two responses provided by 107 families (a total of 364 questionnaires). The majority (94%) of first degree relatives of patients with type 2 diabetes would like to be informed about reducing their risk. Half (48%) of respondents reported being spoken to by a relative with type 2 diabetes about their risk of diabetes. Those spoken to were more likely to see themselves at risk of diabetes, to worry about developing diabetes and to view diabetes as a serious condition. CONCLUSIONS: A role for patients with type 2 diabetes in discussing health risk in their family appears to be acceptable to many relatives. Discussion of risk and interventions to reduce health risk with their relatives should be encouraged in patients with type 2 diabetes.

  9. Do Breast Cancer Patients Tested in the Oncology Care Setting Share BRCA Mutation Results with Family Members and Health Care Providers?

    International Nuclear Information System (INIS)

    Vadaparampil, S. T.; Malo, T.; Cruz, C. D. L.; Christie, J.; Vadaparampil, S. T.

    2012-01-01

    BRCA genetic test results provide important information to manage cancer risk for patients and their families. Little is known on the communication of genetic test results by mutation status with family members and physicians in the oncology care setting. As part of a longitudinal study evaluating the impact of genetic counseling and testing among recently diagnosed breast cancer patients, we collected patients' self-reported patterns of disclosure. Descriptive statistics characterized the sample and determined the prevalence of disclosure of BRCA test results to family members and physicians. Of 100 patients who completed the baseline and the 6-month followup survey, 77 reported pursuing testing. The majority shared test results with female first-degree relatives; fewer did with males. Participants were more likely to share results with oncologists compared to surgeons, primary care physicians, or other specialty physicians. These findings suggest that while breast cancer patients may communicate results to at-risk female family members and their medical oncologist, they may need education and support to facilitate communication to other first-degree relatives and providers

  10. Exploring the stigma related experiences of family members of ...

    African Journals Online (AJOL)

    The stigma of families is seen in the form of assignment of blame, social isolation and rejection. This stigma subsequently perpetuates a cycle of disability on the part of the patient and family. Purpose: To explore the stigma related experiences of family members of persons with mental illness in a selected community in the ...

  11. Lack of hygiene routines among patients and family members at patient hotels--a possible route for transmitting puerperal fever.

    Science.gov (United States)

    Starlander, Gustaf; Lytsy, Birgitta; Melhus, Asa

    2010-07-01

    The use of patient hotels for ambulatory care of women with uncomplicated deliveries has become a routine in Sweden. This report describes a minor outbreak of a group A Streptococcus strain in 2 newly delivered mothers and their newborn babies at a patient hotel.

  12. Assessment of satisfaction with care and decision-making among English and Spanish-speaking family members of neuroscience ICU patients.

    Science.gov (United States)

    Hagerty, Thomas A; Velázquez, Ángela; Schmidt, J Michael; Falo, Cristina

    2016-02-01

    Patients' and family members' experiences of hospital care are important indicators of quality. "Black, Asian, and Hispanic patients are more at risk than White patients for decreased satisfaction with care." In addition, of any of these groups, Hispanic patients were most likely to report a lack of patient-centered care. In the intensive care setting, (ICU) previous research has indicated that the needs and satisfaction of family members of neurological ICU patients are different from those of family members of other types of ICU patients. The purpose of this study was to determine if there were any differences between English-speaking and Spanish-speaking family members of patients in a neurological ICU. This study was a single center prospective study conducted over a 10-month period from April 2013 to February 2014 in the 18-bed neuroscience ICU of a large, urban, academic medical center. The Family Satisfaction with ICU (FS-ICU) questionnaire was used; it provides an overall score and has two factors: satisfaction with care and satisfaction with decision-making. There was no statistical significance between the two groups in overall satisfaction or in satisfaction with care, however Spanish-speakers (n=22) were significantly less satisfied (p=.04) than English-speakers (n=50) with decision-making. There were three other discreet variables in which Spanish-speakers were also less satisfied: (a) management of patients' pain (OR 3.16, 95% CI [1.12, 8.9]) (b) management of patients' breathlessness (OR 3.5, 95% CI [1.23, 9.96]) as well as (c) ease of getting information (OR 3.25, 95% CI [1.09, 9.64]). Using a standardized survey it was found that Spanish-speakers were statistically less satisfied with decision-making than English-speakers. Additionally, Spanish-speakers were statistically less satisfied with management of patients' pain and breathlessness and ease of getting information. Based on these findings, increased vigilance is recommended regarding decision

  13. A Qualitative Study to Appraise Patients and Family Members Perceptions, Knowledge, and Attitudes towards Venous Thromboembolism Risk.

    Directory of Open Access Journals (Sweden)

    Claudie Haxaire

    Full Text Available This study aimed to examine perception, knowledge and concerns developed by patients and their family as regards venous thromboembolism (VTE risk.We conducted a qualitative study. Participants were: (1 patients with unprovoked VTE with either factor V Leiden mutation or G20210A prothrombin gene mutation or not; and (2 their first-degree relatives. Interviews took place mostly at Brest University Hospital. Participants produced narratives of the patient's illness, stressing their perception of the disorder, its mechanisms, etiology, circumstances and risk factors. Interviews were audiotaped and transcribed verbatim. On an ongoing basis, central themes were identified and data from narratives were categorized by these themes.A total of ten patients and 25 first-degree relatives were interviewed. Analyses of patient's narratives suggested 4 main themes: (1 concerns about initial symptoms and suspicion of VTE. The longer the duration of the initial phase, the more likely anxiety took place and persisted after diagnosis; (2 underestimation of potential life-threatening episode once being managed in emergency; (3 possible biographical disruption with inability to cope with the event; and (4 secondary prevention attitudes motivated by remains of the episode and favoring general prevention attitudes. Analyses of the first-degree relatives narratives suggested 3 main themes: (1 common interpretation of the VTE episode shared within the family; (2 diverse and sometimes confusing interpretation of the genetic status; and, (3 interpretation of clinical signs linked to VTE transmission within the family.Construction of the risk of VTE is based on patient's initial experience and shared within the family. Collection of narratives illustrates the gap between these perceptions and current medical knowledge. These results support the need to collect the perceptions of the VTE episode and its consequences, as a prerequisite to any health education process.

  14. Organ S values and effective doses for family members exposed to adult patients following I-131 treatment: A Monte Carlo simulation study

    Energy Technology Data Exchange (ETDEWEB)

    Han, Eun Young [Department of Radiation Oncology, University of Arkansas Medical Sciences, Little Rock, Arkansas 72205 (United States); Lee, Choonsik [Division of Cancer Epidemiology and Genetics, National Cancer Institute, National Institute of Health, Bethesda, Maryland 20852 (United States); Mcguire, Lynn; Brown, Tracy L. Y. [Department of Radiology, Division of Nuclear Medicine, University of Arkansas Medical Sciences, Little Rock, Arkansas 72205 (United States); Bolch, Wesley E. [J. Crayton Pruitt Family Department of Biomedical Engineering, University of Florida, Gainesville, Florida 32611 (United States)

    2013-08-15

    Purpose: To calculate organ S values (mGy/Bq-s) and effective doses per time-integrated activity (mSv/Bq-s) for pediatric and adult family members exposed to an adult male or female patient treated with I-131 using a series of hybrid computational phantoms coupled with a Monte Carlo radiation transport technique.Methods: A series of pediatric and adult hybrid computational phantoms were employed in the study. Three different exposure scenarios were considered: (1) standing face-to-face exposures between an adult patient and pediatric or adult family phantoms at five different separation distances; (2) an adult female patient holding her newborn child, and (3) a 1-yr-old child standing on the lap of an adult female patient. For the adult patient model, two different thyroid-related diseases were considered: hyperthyroidism and differentiated thyroid cancer (DTC) with corresponding internal distributions of {sup 131}I. A general purpose Monte Carlo code, MCNPX v2.7, was used to perform the Monte Carlo radiation transport.Results: The S values show a strong dependency on age and organ location within the family phantoms at short distances. The S values and effective dose per time-integrated activity from the adult female patient phantom are relatively high at shorter distances and to younger family phantoms. At a distance of 1 m, effective doses per time-integrated activity are lower than those values based on the NRC (Nuclear Regulatory Commission) by a factor of 2 for both adult male and female patient phantoms. The S values to target organs from the hyperthyroid-patient source distribution strongly depend on the height of the exposed family phantom, so that their values rapidly decrease with decreasing height of the family phantom. Active marrow of the 10-yr-old phantom shows the highest S values among family phantoms for the DTC-patient source distribution. In the exposure scenario of mother and baby, S values and effective doses per time-integrated activity to

  15. Organ S values and effective doses for family members exposed to adult patients following I-131 treatment: A Monte Carlo simulation study

    International Nuclear Information System (INIS)

    Han, Eun Young; Lee, Choonsik; Mcguire, Lynn; Brown, Tracy L. Y.; Bolch, Wesley E.

    2013-01-01

    Purpose: To calculate organ S values (mGy/Bq-s) and effective doses per time-integrated activity (mSv/Bq-s) for pediatric and adult family members exposed to an adult male or female patient treated with I-131 using a series of hybrid computational phantoms coupled with a Monte Carlo radiation transport technique.Methods: A series of pediatric and adult hybrid computational phantoms were employed in the study. Three different exposure scenarios were considered: (1) standing face-to-face exposures between an adult patient and pediatric or adult family phantoms at five different separation distances; (2) an adult female patient holding her newborn child, and (3) a 1-yr-old child standing on the lap of an adult female patient. For the adult patient model, two different thyroid-related diseases were considered: hyperthyroidism and differentiated thyroid cancer (DTC) with corresponding internal distributions of 131 I. A general purpose Monte Carlo code, MCNPX v2.7, was used to perform the Monte Carlo radiation transport.Results: The S values show a strong dependency on age and organ location within the family phantoms at short distances. The S values and effective dose per time-integrated activity from the adult female patient phantom are relatively high at shorter distances and to younger family phantoms. At a distance of 1 m, effective doses per time-integrated activity are lower than those values based on the NRC (Nuclear Regulatory Commission) by a factor of 2 for both adult male and female patient phantoms. The S values to target organs from the hyperthyroid-patient source distribution strongly depend on the height of the exposed family phantom, so that their values rapidly decrease with decreasing height of the family phantom. Active marrow of the 10-yr-old phantom shows the highest S values among family phantoms for the DTC-patient source distribution. In the exposure scenario of mother and baby, S values and effective doses per time-integrated activity to the

  16. A Family Affair : Explaining Co-Working By Family Members

    NARCIS (Netherlands)

    Ruijter, Esther de; Lippe, Tanja van der; Raub, Werner; Weessie, Jeroen

    2008-01-01

    This study focuses on co-working by intimate partners and other family members in entrepreneurs’ businesses. We hypothesize that co-working by family is beneficial because it reduces trust problems associated with employment relations. On the other hand, co-working is risky because co-working family

  17. Fulfilling the psychological and information need of the family members of critically ill patients using interactive mobile technology: A randomised controlled trial.

    Science.gov (United States)

    Chiang, Vico Chung Lim; Lee, Rainbow Lai Ping; Ho, Fung Mei; Leung, Chi Kwong; Tang, Yi Pui; Wong, Wing Sze; Ho, Yee Sin; Tung, Yan Wai; Lai, Hang Louie

    2017-08-01

    Intensive care nurses may have an important role in empowering families by providing psychological support and fulfilling the family's pivotal need for information. To determine whether 'education of families by tab' about the patient's condition was more associated with improved anxiety, stress, and depression levels than the 'education of families by routine'. A randomized control trial of 74 main family caregivers (intervention: 39; control: 35). An adult intensive care unit. Depression Anxiety Stress Scale, and Communication and Physical Comfort Scale. Although information need satisfaction was not significantly different between intervention and control groups, the former reported significantly better depression score on Depression Anxiety Stress Scale comparing to the control group (psize. Reduction of anxiety in the intervention group were clinically significant. The results suggest that use of 'education of family by tab' is promising for intensive care nurses to provide psychological support for family members. More studies are needed to investigate this aspect of family care for better psychological support and information need satisfaction that contributes to the evidence-based practice of intensive care nursing. Copyright © 2017 Elsevier Ltd. All rights reserved.

  18. What is a 'secure base' when death is approaching? A study applying attachment theory to adult patients' and family members' experiences of palliative home care.

    Science.gov (United States)

    Milberg, A; Wåhlberg, R; Jakobsson, M; Olsson, E-C; Olsson, M; Friedrichsen, M

    2012-08-01

    Attachment theory has received much interest lately in relation to how adults cope with stress and severe illness. The aim of this study was using the experiences of patients and family members to explore palliative home care as a 'secure base' (a central concept within the theory). Twelve patients and 14 family members were interviewed during ongoing palliative home care. The interviews were analysed with deductive qualitative content analysis. Informants expressed the relevance of sensing security during palliative home care because death and dying were threats that contributed to vulnerability. Palliative home care could foster a feeling of security and provide a secure base. This was facilitated when informants had trust in staff (e.g. due to availability and competence in providing symptom relief), felt recognised as individuals and welcomed to contact the team in times of needs. Being comfortable, informed and having an everyday life also contributed to a perception of palliative home care as a secure base. Family members stressed the importance of being relieved from responsibilities that were too heavy. The underlying meanings of experiencing palliative home care as a secure base involved gaining a sense of control and of inner peace, perceiving that despite a demanding and changed life situation, one could continue partially being oneself and having something to hope for, even if this no longer concerned cure for the ill person. Important aspects of palliative home care as providing a secure base were identified and these have implications for clinical practice. Copyright © 2011 John Wiley & Sons, Ltd.

  19. Online participation: a content analysis of differences in utilization of two online cancer communities by men and women, patients and family members.

    Science.gov (United States)

    Ginossar, Tamar

    2008-01-01

    The Internet provides a new modality for health communication by facilitating the creation of virtual communities. These communities have the potential to influence health behavior beyond traditional FTF support groups. This study utilized content analysis of 1,424 e-mail messages posted to 2 online cancer communities to examine uses of these groups. Findings revealed (a) similarities in the content of communication in the 2 virtual communities, (b) gender differences in participation, and (c) differences in utilization of these online groups between patients and family members. These results are discussed in light of the diverse uses of online cancer communities that they reveal, the role of family members in support seeking and provision, and gender communication styles in health computer-mediated communication.

  20. Identification of Depressive Signs in Patients and Their Family Members During iPad-based Audiovisual Sessions.

    Science.gov (United States)

    Smith, Carol E; Werkowitch, Marilyn; Yadrich, Donna Macan; Thompson, Noreen; Nelson, Eve-Lynn

    2017-07-01

    Home parenteral nutrition requires a daily life-sustaining intravenous infusion over 12 hours. The daily intravenous infusion home care procedures are stringent, time-consuming tasks for patients and family caregivers who often experience depression. The purposes of this study were (1) to assess home parenteral nutrition patients and caregivers for depression and (2) to assess whether depressive signs can be seen during audiovisual discussion sessions using an Apple iPad Mini. In a clinical trial (N = 126), a subsample of 21 participants (16.7%) had depressive symptoms. Of those with depression, 13 participants were home parenteral nutrition patients and eight were family caregivers; ages ranged from 20 to 79 years (with 48.9 [standard deviation, 17.37] years); 76.2% were female. Individual assessments by the mental health nurse found factors related to depressive symptoms across all 21 participants. A different nurse observed participants for signs of depression when viewing the videotapes of the discussion sessions on audiovisual technology. Conclusions are that depression questionnaires, individual assessment, and observation using audiovisual technology can identify depressive symptoms. Considering the growing provision of healthcare at a distance, via technology, recommendations are to observe and assess for known signs and symptoms of depression during all audiovisual interactions.

  1. Shaping an Effective Health Information Website on Rare Diseases Using a Group Decision-Making Tool: Inclusion of the Perspectives of Patients, Their Family Members, and Physicians

    Science.gov (United States)

    Litzkendorf, Svenja; Schmidt, Katharina; Pauer, Frédéric; Damm, Kathrin; Frank, Martin; Graf von der Schulenburg, Johann-Matthias

    2017-01-01

    Background Despite diverging definitions on rare conditions, people suffering from rare diseases share similar difficulties. A lack of experience by health professionals, a long wait from first symptoms to diagnosis, scarce medical and scientific knowledge, and unsatisfactory treatment options all trigger the search for health information by patients, family members, and physicians. Examining and systematically integrating stakeholder needs can help design information platforms that effectively support this search. Objective The aim of this study was to innovate on the group decision-making process involving patients, family members, and physicians for the establishment of a national rare disease Internet platform. We determined differences in the relevance of health information—especially examining quantifiable preference weights—between these subgroups and elucidated the structure and distribution of these differences in people suffering from rare diseases, their family members, and physicians, thus providing information crucial to their collaboration. Methods The included items were identified using a systematic Internet research and verified through a qualitative interview study. The identified major information needs included medical issues, research, social help offers, and current events. These categories further comprised sublevels of diagnosis, therapy, general disease pattern, current studies, study results, registers, psychosocial counseling, self-help, and sociolegal advice. The analytic hierarchy process was selected as the group decision-making tool. A sensitivity analysis was used to determine the stability and distribution of results. t tests were utilized to examine the results’ significance. Results A total of 176 questionnaires were collected; we excluded some questionnaires in line with our chosen consistency level of 0.2. Ultimately, 120 patients, 24 family members, and 32 physicians participated in the study (48 men and 128 women, mean

  2. Shaping an Effective Health Information Website on Rare Diseases Using a Group Decision-Making Tool: Inclusion of the Perspectives of Patients, Their Family Members, and Physicians.

    Science.gov (United States)

    Babac, Ana; Litzkendorf, Svenja; Schmidt, Katharina; Pauer, Frédéric; Damm, Kathrin; Frank, Martin; Graf von der Schulenburg, Johann-Matthias

    2017-11-20

    Despite diverging definitions on rare conditions, people suffering from rare diseases share similar difficulties. A lack of experience by health professionals, a long wait from first symptoms to diagnosis, scarce medical and scientific knowledge, and unsatisfactory treatment options all trigger the search for health information by patients, family members, and physicians. Examining and systematically integrating stakeholder needs can help design information platforms that effectively support this search. The aim of this study was to innovate on the group decision-making process involving patients, family members, and physicians for the establishment of a national rare disease Internet platform. We determined differences in the relevance of health information-especially examining quantifiable preference weights-between these subgroups and elucidated the structure and distribution of these differences in people suffering from rare diseases, their family members, and physicians, thus providing information crucial to their collaboration. The included items were identified using a systematic Internet research and verified through a qualitative interview study. The identified major information needs included medical issues, research, social help offers, and current events. These categories further comprised sublevels of diagnosis, therapy, general disease pattern, current studies, study results, registers, psychosocial counseling, self-help, and sociolegal advice. The analytic hierarchy process was selected as the group decision-making tool. A sensitivity analysis was used to determine the stability and distribution of results. t tests were utilized to examine the results' significance. A total of 176 questionnaires were collected; we excluded some questionnaires in line with our chosen consistency level of 0.2. Ultimately, 120 patients, 24 family members, and 32 physicians participated in the study (48 men and 128 women, mean age=48 years, age range=17-87 years

  3. Understanding type 2 diabetes: including the family member's perspective.

    LENUS (Irish Health Repository)

    White, Patricia

    2012-02-01

    PURPOSE: The purpose of this study was to examine the relationship between psychological and social factors and diabetes outcomes in people with type 2 diabetes and their family members. METHODS: A total of 153 patients with type 2 diabetes were assessed at a diabetes outpatient clinic and postal questionnaires were sent to nominated family members. The measures examined were diabetes knowledge, social support, well-being, and illness perceptions. RESULTS: When compared with those with diabetes, family members reported lower positive well-being and lower levels of satisfaction with support. They also perceived diabetes as a more cyclical illness, which was controlled more by treatment than by the individual. Family members also reported that the person with diabetes was more emotionally distressed and knew more about diabetes than the patient had actually reported himself or herself. There were no differences between the family members of those in good or poor glycaemic control. CONCLUSIONS: This study reinforces the importance of understanding social context and illness beliefs in diabetes management. It also highlights the potential for including family members in discussions and education about diabetes management.

  4. Grief elaboration in families with handicapped member.

    Science.gov (United States)

    Calandra, C; Finocchiaro, G; Raciti, L; Alberti, A

    1992-01-01

    Families with handicapped member seem to follow the same five stages (rejection and isolation, anger, dealing with the problem, depression, acceptance) of Kubler-Ross grief elaboration theory while dealing with the narcissistic wound of a handicapped child. Some of these families show a block in one of the stages. The effort of psychotherapy is to remove the block and let them reach the last stage. In this paper families under systemic psychotherapeutic treatment are analyzed, who had in common the birth of a child with low or modest invalidating signs and psychotic or autistic features. The families structure did not show the characteristics of a psychotic family. Nevertheless either one or both parents ignored the evidence of their child disease and they built a "disease-incongrous" wait around the child, trying to push away the painful reality. The authors explain the importance of this approach for the improvement of the autistic traits.

  5. Measurement of the Dose to the Family Members Taking Care of Thyroid Cancer Patients Undergoing I-131 Therapy in Nuclear Medicine Using TLD-100.

    Science.gov (United States)

    Zehtabian, M; Dehghan, N; Danaei Ghazanfarkhani, M; Haghighatafshar, M; Sina, S

    2017-05-01

    The family members or friends of the patients undergoing treatment using radioiodine in nuclear medicine are inevitably exposed to ionization radiation. The purpose of this study is measurement of the dose received by the people taking care of the thyroid cancer patients treated by 131I. For this purpose, the dose amounts received by 29 people accompanying patients were measured using thermoluminescence dosimeters. A badge containing three TLD-100 chips was given to each caregiver. The people were asked to wear the badges for 24 days, when they are taking care of the patients. Finally the dose to each person was estimated by averaging the readings of the three TLDs. The measured dose amounts to the people were compared with the recommendations of international commitions. According to the results obtained in this study, the amounts of dose received by the caregivers were between 0.03 and 0.38 mSv, with the average of 0.12 mSv. By comparison of the results of this study with the recommendations of International Commission on Radiological Protection (ICRP), it can be observed that the dose to family members of the patients is less than the dose constraints. However, it is recommended that the caregivers be aware of the radiation protection principles in order to reduce their dose. © The Author 2016. Published by Oxford University Press. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

  6. Measurement of the dose to the family members taking care of thyroid cancer patients undergoing I-131 therapy in nuclear medicine using TLD-100

    International Nuclear Information System (INIS)

    Zehtabian, M.; Dehghan, N.; Danaei Ghazanfarkhani, M.; Haghighatafshar, M.; Sina, S.

    2017-01-01

    The family members or friends of the patients undergoing treatment using radioiodine in nuclear medicine are inevitably exposed to ionization radiation. The purpose of this study is measurement of the dose received by the people taking care of the thyroid cancer patients treated by "1"3"1I. For this purpose, the dose amounts received by 29 people accompanying patients were measured using thermoluminescence dosimeters. A badge containing three TLD-100 chips was given to each caregiver. The people were asked to wear the badges for 24 days, when they are taking care of the patients. Finally the dose to each person was estimated by averaging the readings of the three TLDs. The measured dose amounts to the people were compared with the recommendations of international commissions. According to the results obtained in this study, the amounts of dose received by the caregivers were between 0.03 and 0.38 mSv, with the average of 0.12 mSv. By comparison of the results of this study with the recommendations of International Commission on Radiological Protection (ICRP), it can be observed that the dose to family members of the patients is less than the dose constraints. However, it is recommended that the caregivers be aware of the radiation protection principles in order to reduce their dose. (authors)

  7. Radiation protection recommendations to the family and the members of the public following a therapeutic administration of a radiopharmaceutical to a patient

    International Nuclear Information System (INIS)

    Gardin, I.

    2002-01-01

    In the aim to propose recommendations, simulations were performed for restricting the radiation hazards to the family and the members of the public coming into contact with a patient treated with 131 I for a thyroid pathology. The simulated dose constraints were 1 mSv for the children, 3 mSv and 5 mSv for the adults (family and close friends), and 0,3 mSv and 1 mSv for the members of the public. Several contact patterns were tested: daily visits, public transports, return to work, sleeping with partner and close contact with children. The recommendations duration was evaluated both as a function of the administrated activity (out-patient) or the residual activity (discharged in-patient) by measuring the dose rate at 1 m distance from the patient. Daily visits at home from a close friend can last 3 hours, without the visitor receives a radiation dose exceeding 1 mSv, if the distance between the patient and the visitor is higher than 1 m. It is unnecessary to recommend restrictions on the use of public transport, except in the case of transport longer than 2 hours on the day of leaving the hospital depending on residual activity. For return to work recommendations are given. For partners, the main exposition occurs during the night, and recommendation to use separate rooms during a period of time depending on residual activity is given. Patient should be advised to refrain from close contact with children and pregnant women during a period of time depending on the residual activity. Particular consideration needs to be given to children aged 6 years or younger. Dose constraint values of 0,3 mSv for the members of the public and 3 mSv for close friends can lead to very restrictive recommendations. On the other hand, dose constraint values of 1 mSv for the members of the public and 5 mSv for close friends seams to be a better compromise for a reasonable radiation hazards of the family and the members of the public. (authors)

  8. An exploration of lifestyle beliefs and lifestyle behaviour following stroke: findings from a focus group study of patients and family members.

    Science.gov (United States)

    Lawrence, Maggie; Kerr, Susan; Watson, Hazel; Paton, Gillian; Ellis, Graham

    2010-12-08

    Stroke is a major cause of disability and family disruption and carries a high risk of recurrence. Lifestyle factors that increase the risk of recurrence include smoking, unhealthy diet, excessive alcohol consumption and physical inactivity. Guidelines recommend that secondary prevention interventions, which include the active provision of lifestyle information, should be initiated in hospital, and continued by community-based healthcare professionals (HCPs) following discharge. However, stroke patients report receiving little/no lifestyle information.There is a limited evidence-base to guide the development and delivery of effective secondary prevention lifestyle interventions in the stroke field. This study, which was underpinned by the Theory of Planned Behaviour, sought to explore the beliefs and perceptions of patients and family members regarding the provision of lifestyle information following stroke. We also explored the influence of beliefs and attitudes on behaviour. We believe that an understanding of these issues is required to inform the content and delivery of effective secondary prevention lifestyle interventions. We used purposive sampling to recruit participants through voluntary sector organizations (29 patients, including 7 with aphasia; 20 family members). Using focus group methods, data were collected in four regions of Scotland (8 group discussions) and were analysed thematically. Although many participants initially reported receiving no lifestyle information, further exploration revealed that most had received written information. However, it was often provided when people were not receptive, there was no verbal reinforcement, and family members were rarely involved, even when the patient had aphasia. Participants believed that information and advice regarding healthy lifestyle behaviour was often confusing and contradictory and that this influenced their behavioural intentions. Family members and peers exerted both positive and negative

  9. Effect of a psycho-educational intervention for family members on caregiver burdens and psychiatric symptoms in patients with schizophrenia in Shiraz, Iran

    Science.gov (United States)

    2012-01-01

    Background This study explored the effectiveness of family psycho-education in reducing patients’ symptoms and on family caregiver burden. Methods Seventy Iranian outpatients with a diagnosis of schizophrenia disorder and their caregivers were randomly allocated to the experimental (n = 35) or control groups (n = 35). Patients in the experimental group received antipsychotic drug treatment and a psycho-educational program was arranged for their caregivers. The psycho-educational program consisted of ten 90-min sessions held during five weeks (two session in each week). Each caregiver attended 10 sessions (in five weeks) At baseline, immediately after intervention, and one month later. Validated tools were used to assess patients’ clinical status and caregiver burden. Results Compared with the control group, the case group showed significantly reduced symptom severity and caregiver burden both immediately after intervention and one month later. Conclusions These results suggest that even need based short-term psycho-educational intervention for family members of Iranian patients with schizophrenic disorder may improve the outcomes of patients and their families. Trial registration IRCT Number:138809122812 N1` PMID:22632135

  10. The Liverpool Care Pathway for cancer patients dying in hospital medical wards: a before-after cluster phase II trial of outcomes reported by family members.

    Science.gov (United States)

    Costantini, Massimo; Pellegrini, Fabio; Di Leo, Silvia; Beccaro, Monica; Rossi, Carla; Flego, Guia; Romoli, Vittoria; Giannotti, Michela; Morone, Paola; Ivaldi, Giovanni P; Cavallo, Laura; Fusco, Flavio; Higginson, Irene J

    2014-01-01

    Hospital is the most common place of cancer death but concerns regarding the quality of end-of-life care remain. Preliminary assessment of the effectiveness of the Liverpool Care Pathway on the quality of end-of-life care provided to adult cancer patients during their last week of life in hospital. Uncontrolled before-after intervention cluster trial. The trial was performed within four hospital wards participating in the pilot implementation of the Italian version of the Liverpool Care Pathway programme. All cancer patients who died in the hospital wards 2-4 months before and after the implementation of the Italian version of Liverpool Care Pathway were identified. A total of 2 months after the patient's death, bereaved family members were interviewed using the Toolkit After-Death Family Interview (seven 0-100 scales assessing the quality of end-of-life care) and the Italian version of the Views of Informal Carers - Evaluation of Services (VOICES) (three items assessing pain, breathlessness and nausea-vomiting). An interview was obtained for 79 family members, 46 (73.0%) before and 33 (68.8%) after implementation of the Italian version of Liverpool Care Pathway. Following Italian version of Liverpool Care Pathway implementation, there was a significant improvement in the mean scores of four Toolkit scales: respect, kindness and dignity (+16.8; 95% confidence interval = 3.6-30.0; p = 0.015); family emotional support (+20.9; 95% confidence interval = 9.6-32.3; p family self-efficacy (+14.3; 95% confidence interval = 0.3-28.2; p = 0.049) and coordination of care (+14.3; 95% confidence interval = 4.2-24.3; p = 0.007). No significant improvement in symptom' control was observed. These results provide the first robust data collected from family members of a preliminary clinically significant improvement, in some aspects, of quality of care after the implementation of the Italian version of Liverpool Care Pathway programme. The poor effect for symptom control suggests

  11. The high price of depression: Family members' health conditions and health care costs.

    Science.gov (United States)

    Ray, G Thomas; Weisner, Constance M; Taillac, Cosette J; Campbell, Cynthia I

    2017-05-01

    To compare the health conditions and health care costs of family members of patients diagnosed with a Major Depressive Disorder (MDD) to family members of patients without an MDD diagnosis. Using electronic health record data, we identified family members (n=201,914) of adult index patients (n=92,399) diagnosed with MDD between 2009 and 2014 and family members (n=187,011) of matched patients without MDD. Diagnoses, health care utilization and costs were extracted for each family member. Logistic regression and multivariate models were used to compare diagnosed health conditions, health services cost, and utilization of MDD and non-MDD family members. Analyses covered the 5years before and after the index patient's MDD diagnosis. MDD family members were more likely than non-MDD family members to be diagnosed with mood disorders, anxiety, substance use disorder, and numerous other conditions. MDD family members had higher health care costs than non-MDD family members in every period analyzed, with the highest difference being in the year before the index patient's MDD diagnosis. Family members of patients with MDD are more likely to have a number of health conditions compared to non-MDD family members, and to have higher health care cost and utilization. Copyright © 2017. Published by Elsevier Inc.

  12. The dying child and surviving family members.

    Science.gov (United States)

    Shrier, D K

    1980-12-01

    This overview of death and dying focuses on the dying child and surviving family members. Children's concepts of death at different developmental stages are reviewed. These range from an inability to distinguish death from other forms of separation prior to age 3, through partial concepts of death until, by age 10 to 15 years, children are able to conceptualize death as universal, inevitable and final. The importance of adults assisting in the child's growing comprehension of death is stressed. The stages of grief and mourning, as outlined by Kubler-Ross, are reviewed from the perspective of the child and family: denial, anger, bargaining, depression and acceptance. Recognition is given to the variations in coping styles among different family members. The special circumstances related to the death of an infant and the impact of the death of a child on the surviving siblings are discussed. Specific helpful interventions to assist families in coping with mourning are described. The death of a child remains one of the most painful and difficult events for a family and its physician to accept.

  13. 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.

  14. Sensory loss amongst old family members

    DEFF Research Database (Denmark)

    Rasmussen, Jon Dag; Winther, Ida Wentzel

    2018-01-01

    and their close family. Our tentative findings point towards a prominence of different insecurities and discomforts in social life that directly links to the decreased sensory abilities. Experiences of being ‘lost’, ‘set afloat’ and disconnected in everyday life interactions are broadly described by all...... on the old people suffering a decline in sensory abilities, but also on family members as individual loss becomes collective loss in the context of family and kinship. The paper presentation takes its point of departure in rough pieces of empirical material (e.g. film-clips, sound......-clips/montage and ethnographic description) and through exposition of tentative analysis and research findings we aim to initiate a discussion around central themes of the work....

  15. Qualitative Study on the Perceptions of Terminally Ill Cancer Patients and Their Family Members Regarding End-of-Life Experiences Focusing on Palliative Sedation.

    Science.gov (United States)

    Eun, Young; Hong, In-Wha; Bruera, Eduardo; Kang, Jung Hun

    2017-06-01

    Patients with terminal cancer experience refractory symptoms in the last days of life. Although palliative sedation (PS) is recommended for patients suffering unbearable symptoms with imminent death, it requires clear communication between physicians and patients/caregivers. Understanding the demands and perceptions of patients and caregivers in the end-of-life phase are needed for effective communication. To explore patient experiences regarding end-of-life status and PS. The study was performed between October and December, 2013 with eligible terminal cancer patients and their families in a non-religious, tertiary healthcare facility in Korea. Eligibility criteria were a hospitalized cancer patient with a life expectancy of less than three months and who had never experienced PS. Data were collected via face-to-face in-depth interviews and analyzed using the constant comparative method of qualitative analysis. Saturation was achieved after conducting interviews with 13 patients or care-giving family members. Enrolled patients raised the following issues: 1) simultaneously harboring the hope of prolonging life and wishing for a peaceful death, 2) experiencing difficulties in having honest conversations with caregivers regarding death, 3) possessing insufficient knowledge and information regarding PS, and 4) hoping for the decision on PS to be made before suffering becomes too great. Terminally ill cancer patients and their caregivers expressed conflicting desires in hoping to prolong life and simultaneously wishing to experience a peaceful death. Improvements in the communications that occur among physicians, patients, and caregivers on the issues of prognosis and PS are needed. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  16. The Elixir of Visiting: A Qualitative Study on the Experiences of Conscious Mechanically Ventilated Patients in Intensive Care Units Regarding Visiting Family Members

    Directory of Open Access Journals (Sweden)

    Fatemeh Hajiabadi

    2017-07-01

    Full Text Available Background: Visiting family members is one of the basic human needs; however, there is contradictory evidence about the advantages and disadvantages of the existing visiting systems.  Therefore, the investigation of patients’ preferences for the visiting strategies, and achievement of their authentic experiences can significantly contribute to decision-making about the type of acceptable and approved policies in this domain. Aim: The aim of this study was to explain the experiences of conscious patients undergoing mechanical ventilation in Intensive Care Units regarding their visits with their family members. Method: This qualitative study was conducted on 15 conscious mechanically ventilated patients admitted to the Intensive Care Unit in Iran in 2017. The data were collected using semi-structured interviews and observations. The sampling was performed through purposive sampling technique, which was continued until data saturation to select the individuals with rich experiences about the subject under investigation. The data were analyzed through the conventional type of qualitative content analysis. Results: Out of the initial 385 codes, 11 subthemes and 5 main themes were extracted during the analysis process, all of which were placed under the general concept of “the elixir of visiting”. The five main themes included visiting as a healing agent, visiting as an agent for the enhancement of perceived support, visiting as an agent for gaining hope, visiting as the patient’s urgent need, and preference for planed visiting. Implications for Practice: The results of the present study showed that visiting was like an elixir for the conscious patients undergoing mechanical ventilation in the Intensive Care Units. This practice could allay lots of their pains and lead to numerous valuable effects, such as elimination of loneliness and sadness, increased hope for survival and recovery, and enhancement of a sense of support. Therefore, nursing

  17. The stories they tell: How third year medical students portray patients, family members, physicians, and themselves in difficult encounters.

    Science.gov (United States)

    Shapiro, Johanna; Rakhra, Pavandeep; Wong, Adrianne

    2016-10-01

    Physicians have long had patients whom they have labeled "difficult", but little is known about how medical students perceive difficult encounters with patients. In this study, we analyzed 134 third year medical students' reflective essays written over an 18-month period about difficult student-patient encounters. We used a qualitative computerized software program, Atlas.ti to analyze students' observations and reflections. Main findings include that students described patients who were angry and upset; noncompliant with treatment plans; discussed "nonmedical" problems; fearful, worried, withdrawn, or "disinterested" in their health. Students often described themselves as anxious, uncertain, confused, and frustrated. Nevertheless, they saw themselves behaving in empathic and patient-centered ways while also taking refuge in "standard" behaviors not necessarily appropriate to the circumstances. Students rarely mentioned receiving guidance from attendings regarding how to manage these challenging interactions. These third-year medical students recognized the importance of behaving empathically in difficult situations and often did so. However, they often felt overwhelmed and frustrated, resorting to more reductive behaviors that did not match the needs of the patient. Students need more guidance from attending physicians in order to approach difficult interactions with specific problem-solving skills while maintaining an empathic, patient-centered context.

  18. Ten Warning Signs Your Older Family Member May Need Help

    Science.gov (United States)

    ... Warning Signs Your Older Family Member May Need Help Changes in physical and cognitive abilities that may ... and their family members, friends, and caregivers. To help in determining when an older adult may need ...

  19. Cognitive subtypes in non-affected siblings of schizophrenia patients: characteristics and profile congruency with affected family members

    NARCIS (Netherlands)

    Quee, P.J.; Alizadeh, BZ; Aleman, A.; van den Heuvel, E.R.; Bruggeman, R.; Cahn, W.; de Haan, L.; Kahn, R.; Krabbendam, L.; Linzen, D.; Myin-Germeys, I.; van Os, J; Wiersma, D.

    2013-01-01

    Background. Although cognitive subtypes have been suggested in schizophrenia patients, similar analyses have not been carried out in their non-affected siblings. Subtype classification may provide more insight into genetically driven variation in cognitive function. We investigated cognitive

  20. Meaningful Communication Before Death, but Not Present at the Time of Death Itself, Is Associated With Better Outcomes on Measures of Depression and Complicated Grief Among Bereaved Family Members of Cancer Patients.

    Science.gov (United States)

    Otani, Hiroyuki; Yoshida, Saran; Morita, Tatsuya; Aoyama, Maho; Kizawa, Yoshiyuki; Shima, Yasuo; Tsuneto, Satoru; Miyashita, Mitsunori

    2017-09-01

    Few studies have explored the clinical significance of the family's presence or absence at the moment of a patient's death and meaningful communication (saying "goodbye") in terms of post-bereavement outcomes. To explore the potential association between the family's depression/complicated grief and their presence at the moment of a patient's death and the patient's communication with the family. A nationwide questionnaire survey was conducted on 965 family members of cancer patients who had died at palliative care units. More than 90% of family members wished to have been present at the moment of death (agree: 40%, n = 217; strongly agree: 51%, n = 280); 79% (n = 393) thereof were present. Families' presence at death was not significantly associated with the occurrence of depression and complicated grief, but the dying patient's ability to say "goodbye" to the family beforehand was (depression: adjusted odds rate, 0.42; 95% CI, 0.26-0.69 adjusted P = 0.001; complicated grief: adjusted odds rate, 0.53; 95% CI, 0.29-0.94 adjusted P = 0.009). Many families wished to be present at the moment of the patient's death; however, meaningful communication (saying "goodbye") between the patient and family members, and not their presence or absence itself, was associated with better outcomes on measures of depression or complicated grief. Health care professionals could consider promoting both mutual communication (relating to preparation for death) between family members and patients before imminent death, as well as the family's presence at the moment of death. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  1. Gendering Guilt among Dependent Family Members' Caregivers.

    Science.gov (United States)

    Brea, Maria-Teresa; Albar, María-Jesús; Casado-Mejia, Rosa

    2016-11-17

    This study analyzes guilt among family caregivers of dependent patients, from a gender perspective. A qualitative design was used, conducting in-depth interviews and focus groups. Using purposive sampling, we selected 73 family caregivers and 23 health professionals (family medicine, community nursing, and social work) from the Primary Care District of Seville. The content of the information collected was analyzed in terms of the following categories: a) guilt for abandoning family and friends; b) guilt for the relationship with the dependent person; and c) guilt for placing the relative in a nursing home. To validate the findings, data sources, methodological techniques, and researchers' disciplines were all triangulated. Results indicated that women report more guilt than men for abandoning family and friends, and because of their relationship with the dependent person. However, with respect to nursing home placement, no difference was observed as a function of gender. The high incidence of caregiver guilt needs to be addressed by health professionals to avoid the emergence of other mental health issues.

  2. Mental Wellbeing of Family Members of Autistic Adults

    Science.gov (United States)

    Herrema, Renske; Garland, Deborah; Osborne, Malcolm; Freeston, Mark; Honey, Emma; Rodgers, Jacqui

    2017-01-01

    Family members are often the primary caregiver for autistic adults and this responsibility may impact on the carer's wellbeing and quality of life. 109 family members of autistic adults completed an online survey assessing their wellbeing relating to their caring role for their autistic relative. Family members who were supporting an autistic…

  3. Family Members' Reports of the Technology Use of Family Members with Intellectual and Developmental Disabilities

    Science.gov (United States)

    Palmer, S. B.; Wehmeyer, M. L.; Davies, D. K.; Stock, S. E.

    2012-01-01

    Background: A nationwide survey of family members of people with intellectual and developmental disabilities ranging in age from birth through adulthood was conducted to replicate a similar effort by Wehmeyer and update the knowledge base concerning technology use by people with intellectual and developmental disabilities. Method: Survey responses…

  4. Impact of Pathologist Involvement in Sarcoma and Rare Tumor Patient Support Groups on Facebook: A Survey of 542 Patients and Family Members.

    Science.gov (United States)

    Haller, Jasmine; David, Marjorie Parker; Lee, Nathan E; Shalin, Sara C; Gardner, Jerad M

    2018-01-29

    - Patients with rare tumors have difficulty finding reliable information about their disease. Facebook patient support groups allow patients to educate one another. - To investigate how these patients perceive the value of pathologists, both in Facebook groups and real-world patient care. - Survey links were posted in 12 Facebook patient groups: 6 with an active pathologist member (angiosarcoma, epithelioid hemangioendothelioma, epithelioid sarcoma, dermatofibrosarcoma protuberans [×2], and desmoid fibromatosis), and 6 without "active" pathologist involvement (aggressive angiomyxoma, chondrosarcoma, Ewing sarcoma, leiomyosarcoma, liposarcoma, and osteosarcoma). - A total of 542 people responded (403 were patients): 264 from groups with a pathologist, and 278 from groups without active pathologist involvement. Of groups with an active pathologist, respondents agreed the pathologist's posts helped them better understand their disease (107 of 119; 90%) and relieved some of their disease-related anxiety (92 of 119; 77%). And for these groups 98% (117 of 119) of respondents agreed that having a pathologist in their group was a good thing; 83% (192 of 232) wanted more pathologists involved. More respondents from groups with an active pathologist (219 of 236; 93%) than without one (215 of 252; 85%) agreed: "pathologists are an important part of the patient care team for patients with cancer and other rare tumors" ( P = .008). - This study is the first to evaluate the impact of pathologist interaction with Facebook patient support groups and to assess perceptions about the specialty of pathology from a large group of patients with rare tumors. Pathologist involvement in Facebook patient groups appears to positively influence patient perception of the importance of pathologists. We hope these data will encourage more pathologists to participate in Facebook patient support groups.

  5. The relationship between tics, OC, ADHD and autism symptoms: A cross- disorder symptom analysis in Gilles de la Tourette syndrome patients and family-members.

    Science.gov (United States)

    Huisman-van Dijk, Hilde M; Schoot, Rens van de; Rijkeboer, Marleen M; Mathews, Carol A; Cath, Daniëlle C

    2016-03-30

    Gilles de la Tourette's syndrome (GTS) is a disorder in which obsessive-compulsive (OC), Attention Deficit Hyperactivity Disorder (ADHD) and autism symptoms occur in up to 60% of patients, suggesting shared etiology. We explored the phenotypic structure of tic, OC, ADHD, and autism symptoms as measured by the YGTSS,Y-BOCS,CAARS and AQ, in 225 GTS patients and 371 family members. First, Confirmatory Factor Analyses (CFA) were performed on the symptom structure of each separate symptom scale. Second, the symptom dimensions derived from each scale were combined in one model, and correlations between them were calculated. Using the correlation matrix, Exploratory Factor Analyses (EFA) were performed on the symptom dimensions across the scales. EFA revealed a five factor structure: tic/aggression/symmetry; OC symptoms/compulsive tics/ numbers and patterns; ADHD symptoms; autism symptoms; and hoarding/inattention symptoms. The results are partly in line with the traditional categorical boundaries of the symptom scales used, and partly reveal a symptom structure that cuts through the diagnostic categories. This phenotypic structure might more closely reflect underlying etiologies than a structure that classically describes GTS patients according to absence or presence of comorbid OCD, ADHD and autism, and might inform both future genetic and treatment studies. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

  6. The relationship between tics, OC, ADHD and autism symptoms: A cross-disorder symptom analysis in Gilles de la Tourette syndrome patients and their family members

    Science.gov (United States)

    Huisman-van Dijk, Hilde M.; van de Schoot, Rens; Rijkeboer, Marleen M.; Mathews, Carol A; Cath, Dainelle C

    2016-01-01

    Gilles de la Tourette’s syndrome (GTS) is a disorder in which co-morbid obsessive-compulsive (OC), Attention Deficit Hyperactivity Disorder (ADHD) and autism symptoms occur in up to 60% of patients, suggesting shared etiology. We aimed to explore the phenotypic structure underlying GTS, taking tic, OC, ADHD, and autism symptoms into account as measured by various symptom scales (YGTSS, Y-BOCS, CAARS and AQ) in 225 GTS patients and 371 family members. First, Confirmatory Factor Analyses (CFA) were performed on the symptom structure of each separate symptom scale. Second, the symptom dimensions derived from each scale were combined in one model, and correlations between them were calculated. Using the correlation matrix, Exploratory Factor Analyses (EFA) were performed on the symptom dimensions across the scales. EFA revealed a five factor structure: tic/aggression/symmetry; OC symptoms/compulsive tics/numbers and patterns; ADHD symptoms; autism symptoms; and hoarding/inattention symptoms. The symptom factors found in this study are partly in line with the traditional categorical boundaries of the symptom scales used, and partly reveal a symptom structure that cuts through the diagnostic categories. This phenotypic structure might more closely reflect underlying etiologies than a structure that classically describes GTS patients according to absence or presence of comorbid OCD, ADHD and autism, and might inform both future genetic and treatment studies. PMID:26826899

  7. Increased expression of endosomal members of toll-like receptor family abrogates wound healing in patients with type 2 diabetes mellitus.

    Science.gov (United States)

    Singh, Kanhaiya; Agrawal, Neeraj K; Gupta, Sanjeev K; Mohan, Gyanendra; Chaturvedi, Sunanda; Singh, Kiran

    2016-10-01

    The inflammatory phase of wound healing cascade is an important determinant of the fate of the wound. Acute inflammation is necessary to initiate proper wound healing, while chronic inflammation abrogates wound healing. Different endosomal members of toll-like receptor (TLR) family initiate inflammatory signalling via a range of different inflammatory mediators such as interferons, internal tissue damaged-associated molecular patterns (DAMPs) and hyperactive effector T cells. Sustained signalling of TLR9 and TLR7 contributes to chronic inflammation by activating the plasmacytoid dendritic cells. Diabetic wounds are also characterised by sustained inflammatory phase. The objective of this study was to analyse the differential expression of endosomal TLRs in human diabetic wounds compared with control wounds. We analysed the differential expression of TLR7 and TLR9 both at transcriptional and translational levels in wounds of 84 patients with type 2 diabetes mellitus (T2DM) and 6 control subjects without diabetes using quantitative real-time polymerase chain reaction (RT-PCR), western blot and immunohistochemistry. TLR7 and TLR9 were significantly up-regulated in wounds of the patients with T2DM compared with the controls and were dependent on the infection status of the diabetic wounds, and wounds with microbial infection exhibited lower expression levels of endosomal TLRs. Altered endosomal TLR expression in T2DM subjects might be associated with wound healing impairment. © 2015 Medicalhelplines.com Inc and John Wiley & Sons Ltd.

  8. 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.

  9. [Music in human terminality: the family members' conceptions].

    Science.gov (United States)

    Sales, Catarina Aparecida; da Silva, Vladimir Araujo; Pilger, Calíope; Marcon, Sonia Silva

    2011-03-01

    This qualitative study was performed using the multiple case study method and Heidegger's existential phenomenology for data analysis. The objective was to understand how family members perceive the influence of musical experiences on the physical and mental health of a relative living with a terminal illness. Participants were seven individuals belonging to two families. Data collection was performed through interviews and observation from May to June 2009. Results showed that using music while providing care to beings living with cancer can provide well-being to patients as well as their caregivers. Considering the deficit of leisure and the monotony of the home environment, using music contemplates the philosophical and humanitarian precepts of palliative care, thus being characterized as a complementary resource to nursing care, as besides being a communication resource, it improves the interpersonal relationship between patients and their families.

  10. Unrecognized pediatric and adult family members of children with acute brucellosis.

    Science.gov (United States)

    Çiftdoğan, Dilek Yılmaz; Aslan, Selda

    Brucellosis is an infectious, contagious and zoonotic disease that occurs worldwide. The family members of an index case of brucellosis may be especially susceptible, due to sharing the same source of infection and similar risk factors for brucellosis. In this study, we propose to screen pediatric and adult family members of brucellosis index cases for detecting additional unrecognized infected family members. 114 family members of 41 pediatric patients with brucellosis were evaluated. All family members completed a brief questionnaire and were tested by a standard tube agglutination test (STA). The majority of family members (n=96, 84.2%) were children. Among the 114 family members, 42 (36.8%) were seropositive, and 15 (35.7%) were symptomatic. The majority of the symptomatic seropositive family members (n=12, 80%) had STA titers (≥1:640) higher than asymptomatic seropositive family members (n=9, 33%; p=0.004). The routine screening of both pediatric and adult family members of index cases is a priority in endemic areas. Using this screening approach, unrecognized family members who are seropositive for brucellosis will be identified earlier and be able to receive prompt treatment. Copyright © 2017 Sociedade Brasileira de Infectologia. Published by Elsevier Editora Ltda. All rights reserved.

  11. Perceived Family Resources Based on Number of Members with ADHD

    Science.gov (United States)

    Corwin, Melinda; Mulsow, Miriam; Feng, Du

    2012-01-01

    Objective: This study examines how the number of family members with ADHD affects other family members' perceived resources. Method: A total of 40 adolescents diagnosed with ADHD and their mothers, fathers, and adolescent siblings living in the household participated. Hierarchical linear modeling was used to analyze family-level data from a total…

  12. Use of augmentative and alternative communication strategies by family members in the intensive care unit.

    Science.gov (United States)

    Broyles, Lauren M; Tate, Judith A; Happ, Mary Beth

    2012-03-01

    Little is known about communication between patients and their family members during critical illness and mechanical ventilation in the intensive care unit, including use of augmentative and alternative communication tools and strategies. To identify (1) which augmentative and alternative communication tools families use with nonspeaking intensive care patients and how they are used, and (2) what families and nurses say about communication of family members with nonspeaking intensive care patients. A qualitative secondary analysis was conducted of existing data from a clinical trial testing interventions to improve communication between nurses and intensive care patients. Narrative study data (field notes, intervention logs, nurses' interviews) from 127 critically ill adults were reviewed for evidence of family involvement with augmentative and alternative communication tools. Qualitative content analysis was applied for thematic description of family members' and nurses' accounts of patient-family communication. Family involvement with augmentative and alternative communication tools was evident in 44% of the 93 patients who completed the parent study protocol. Spouses or significant others communicated with patients most often. Main themes describing patient-family communication included (1) families being unprepared and unaware, (2) families' perceptions of communication effectiveness, (3) nurses deferring to or guiding patient-family communication, (4) patients' communication characteristics, and (5) families' experience with and interest in augmentative and alternative communication tools. Assessment by skilled bedside clinicians can reveal patients' communication potential and facilitate useful augmentative and alternative communication tools and strategies for patients and their families.

  13. Family members' lived experience in the intensive care unit: a phemenological study.

    LENUS (Irish Health Repository)

    McKiernan, Margaret

    2012-01-31

    AIM: To describe the lived experience of family members of patients in the intensive care unit. BACKGROUND: Admission of a critically ill relative to an intensive care unit causes anxiety and stress to family members. Nursing care is initially focused on maintaining the physiological stability of the patient and less on the needs and concerns of family members. Understanding how families make sense of this experience may help nurses focus on the delivery of family centred care. METHODOLOGY: A phenomenological method was used to describe the lived experiences of family members of patients in an intensive care unit. In-depth interviews were conducted with six family members and analysed using qualitative thematic analysis. RESULTS: Four main themes emerged from the data: the need to know, making sense of it all, being there with them and caring and support. Family members needed honest information about the patient\\'s progress and outcome to make the situation more bearable for them. Making sense of the situation was a continuous process which involved tracking and evaluating care given. Being with their relative sustained their family bond and was a way to demonstrate love and support. Caring reassurance provided by the nurses enabled a sense of security. Support was needed by family members to assist them in coping. CONCLUSION: The research provided an insight into how family members viewed the impact of the admission and how they subsequently found ways of dealing with the situation. RELEVANCE TO CLINICAL PRACTICE: Using a holistic approach to nursing assessment and care delivery in intensive care necessitates that nurses interact with and care for family members of patients. Development of a philosophy of family centred care is necessary, with formal assessment of families to take place soon after admission and an appropriate plan of care drawn up at this time.

  14. Expanding access to naloxone for family members: The Massachusetts experience.

    Science.gov (United States)

    Bagley, Sarah M; Forman, Leah S; Ruiz, Sarah; Cranston, Kevin; Walley, Alexander Y

    2018-05-01

    The Massachusetts Department of Public Health Overdose Education and Naloxone Distribution Program provides overdose education and naloxone rescue kits to people at risk for overdose and bystanders, including family members. Using Massachusetts Department of Public Health data, the aims are to: (i) describe characteristics of family members who receive naloxone; (ii) identify where family members obtain naloxone; and (iii) describe characteristics of rescues by family members. We conducted a retrospective review using program enrollee information collected on a standardised form between 2008 and 2015. We calculated descriptive statistics, including demographics, current substance use, enrolment location, history of witnessed overdoses and rescue attempt characteristics. We conducted a stratified analysis comparing family members who used drugs with those who did not. Family members were 27% of total program enrollees (n = 10 883/40 801). Family members who reported substance use (n = 4679) were 35.6 years (mean), 50.6% female, 76.3% non-Hispanic white, 75.6% had witnessed an overdose, and they obtained naloxone most frequently at HIV prevention programs. Family members who did not report substance use (n = 6148) were 49.2 years (mean), 73.8% female, 87.9% non-Hispanic white, 35.3% had witnessed an overdose, and they obtained naloxone most frequently at community meetings. Family members were responsible for 20% (n = 860/4373) of the total rescue attempts. The Massachusetts experience demonstrates that family members can be active participants in responding to the overdose epidemic by rescuing family members and others. Targeted intervention strategies for families should be included in efforts to expand overdose education and naloxone in Massachusetts. © 2017 Australasian Professional Society on Alcohol and other Drugs.

  15. Posttraumatic stress disorder in women with war missing family members.

    Science.gov (United States)

    Baraković, Devla; Avdibegović, Esmina; Sinanović, Osman

    2014-12-01

    Research in crisis areas indicate that survivors' responses to the forced disappearance of family members are similar to reactions to other traumatic events. The aim of this study was to determine the presence of symptoms of posttraumatic stress disorder (PTSD) in women with war missing family members in Bosnia and Herzegovina 18 years after the war in this region (1992-1995). The study included 160 women aged 47.1±14.0 from three regions of Bosnia and Herzegovina. It was carried out in the period from April 2010 to May 2011. Of the 160 participants, 120 women had a war missing family member and 40 women had no war missing family members. The Harvard Trauma Questionnaire (HTQ), the Beck Depression Inventory (BDI) and the Hamilton Anxiety Rating Scale (HAMA) were used for data collection. Basic socio-demographic data and data concerning the missing family members were also collected. Women with war missing family members experienced significantly more traumatic war experiences (18.43±5.27 vs 6.57±4.34, pfamily members. Women with war missing family members showed significantly more severe PTSD symptoms. Based on the results of this study, it was determined that the forced disappearance of a family member is an ambiguous situation that can be characterized as a traumatic experience.

  16. Optimization of doses received by the hospital staff and the members of the family of patients undergoing In - 111 pentetreotide therapy

    International Nuclear Information System (INIS)

    Kontogeorgakos, D.; Limouris, G.S.; Papanikolos, G.; Vlahos, L.; Carinou, E.; Kamenopoulou, V.; Dimitriou, P.

    2005-01-01

    Full text: According to the Euratom Directives (96/29, 97/43) the doses received by the workers as well as the family of patients and third persons during medical exposures, obey to the Dose Constraint Levels (DCLs), established by the authorities, in the content of optimization in radiation protection. The aim of this study is to present a radiation protection protocol, concerning the aforementioned group members, for patients undergoing treatment with 111 In pentetreotide, after intra-arterial infusion. The doses to the staff were measured by means of lithium fluoride detectors (TLDs). Two finger, one wrist and one whole body TLD by person were used during the therapy procedure. An electronic personal dosemeter for the monitoring of the dose and the dose rate during the procedure was also provided. The TLDs were calibrated in a SSDL. Measurements were simulated with a Monte Carlo code. The dose rate profile from the syringe in various distances was also simulated in order to estimate doses received by the fingers. The radiopharmaceutical infusion (mean value 5,5GBq/infusion) was performed with a shielded syringe (∼1.7 cm Pb) by the medical doctor standing behind a lead shielding (∼2 cm Pb). The labeling procedure was improved by using 20 ml evacuated vials in order to reduce the injection time of the isotope in the octreotide solution. Before treatment the patient was asked to fill in a questionnaire concerning its life conditions. The time of the release of the patient (48 to 72 hrs following infusion), as well as the content and the duration of the behavior instructions given, were determined by the patient's personal data (i.e. conditions at home and work, use of public transport) and the dose rate values. A direct reading personal dosemeter was used in order to confirm that the dose received by the person accompanying the patient is kept below the DC values. Doses received by the staff during the 111 In therapeutic procedures showed to exceed the

  17. Understanding of advance care planning by family members of persons undergoing hemodialysis.

    Science.gov (United States)

    Calvin, Amy O; Engebretson, Joan C; Sardual, S Alexander

    2014-11-01

    The purpose of this qualitative descriptive study was to explore hemodialysis patients' family members' understanding of end-of-life decision-making processes. The project aimed to address (a) family members' constructions of advance care planning (ACP), including their roles and responsibilities, and (b) family members' perceptions of health care providers' roles and responsibilities in ACP. Eighteen family members of persons undergoing hemodialysis were recruited primarily from outpatient dialysis facilities and interviewed individually. Confirmed transcript data were analyzed, coded, and compared, and categories were established. Interpretations were validated throughout the interviews and peer debriefing sessions were used at a later stage in the analysis. The overarching construct identified was one of Protection. Family members protect patients by (a) Sharing Burdens, (b) Normalizing Life, and (c) Personalizing Care. Recommendations for future research include the need to explore ACP of persons undergoing hemodialysis who do not have a family support system. © The Author(s) 2013.

  18. Support for Teens When a Family Member has Cancer

    Science.gov (United States)

    When a parent, brother, or sister has been diagnosed with cancer, family members need extra support. Information to help teens learn how to cope, talk with family members, manage stress, and get support from counselors when a loved one has been diagnosed with, or is being treated for, cancer.

  19. Depression: Supporting a Family Member or Friend

    Science.gov (United States)

    ... Accessed July 9, 2015. Helping someone with a mood disorder. Depression and Bipolar Support Alliance. http://www.dbsalliance.org/site/PageServer?pagename=help_friends_family. Accessed July 9, 2015. Suicide warning signs. American Foundation for Suicide Prevention. https:// ...

  20. Military Personnel: Medical, Family Support, and Educational Services Are Available for Exceptional Family Members

    National Research Council Canada - National Science Library

    Crosse, Marcia

    2007-01-01

    The Department of Defense's (DOD) Exceptional Family Member Program (EFMP) is a mandatory enrollment program for active duty servicemembers who have family members with special medical needs. The Ronald W...

  1. Positive family history of aortic dissection dramatically increases dissection risk in family members.

    Science.gov (United States)

    Ma, Wei-Guo; Chou, Alan S; Mok, Salvior C M; Ziganshin, Bulat A; Charilaou, Paris; Zafar, Mohammad A; Sieller, Richard S; Tranquilli, Maryann; Rizzo, John A; Elefteriades, John A

    2017-08-01

    Although family members of patients with aortic dissection (AoD) are believed to be at higher risk of AoD, the prognostic value of family history (FH) of aortic dissection (FHAD) in family members of patients with AoD has not been studied rigorously. We seek examine how much a positive FHAD increases the risk of developing new aortic dissection (AoD) among first-degree relatives. Patients with AoD at our institution were analyzed for information of FHAD. Positive FHAD referred to that AoD occurred in index patient and one or more first-degree relatives. Negative FHAD was defined as the condition in which only one case of AoD (the index patient) occurred in the family. The age at AoD, exposure years in adulthood before AoD, and annual probability of AoD among first-degree relatives were compared between patients with negative and positive FHADs. FHAD was positive in 32 and negative in 68 among the 100 AoD patients with detailed family history information. Mean age at dissection was 59.9±14.7years. Compared to negative FHAD, patients with positive FHAD dissected at significantly younger age (54.7±16.8 vs 62.4±13.0years, p=0.013), had more AoD events in first-degree relatives (2.3±0.6 vs 1.0±0.0, pfamily members, with a higher annual probability of aortic dissection, a shorter duration of "exposure time" before dissection occurs and a lower mean age at time of dissection. Copyright © 2017 Elsevier Ireland Ltd. All rights reserved.

  2. Members of FOX family could be drug targets of cancers.

    Science.gov (United States)

    Wang, Jinhua; Li, Wan; Zhao, Ying; Kang, De; Fu, Weiqi; Zheng, Xiangjin; Pang, Xiaocong; Du, Guanhua

    2018-01-01

    FOX families play important roles in biological processes, including metabolism, development, differentiation, proliferation, apoptosis, migration, invasion and longevity. Here we are focusing on roles of FOX members in cancers, FOX members and drug resistance, FOX members and stem cells. Finally, FOX members as drug targets of cancer treatment were discussed. Future perspectives of FOXC1 research were described in the end. Copyright © 2017 Elsevier Inc. All rights reserved.

  3. Effectiveness of a nursing intervention in decreasing the anxiety levels of family members of patients undergoing cardiac surgery: a randomized clinical trial.

    Science.gov (United States)

    Hamester, Letícia; Souza, Emiliane Nogueira de; Cielo, Cibele; Moraes, Maria Antonieta; Pellanda, Lúcia Campos

    2016-08-15

    to verify the effectiveness of nursing orientation provided to families of patients in the immediate post-operative following cardiac surgery before the first visit to the post-anesthesia care unit, in decreasing anxiety levels, compared to the unit's routine orientation. open randomized clinical trial addressing family members in the waiting room before the first visit in the immediate post-operative period. The family members assigned to the intervention group received audiovisual orientation concerning the patients' conditions at the time and the control group received the unit's routine orientation. Outcome anxiety was assessed using the STAI-State. 210 individuals were included, 105 in each group, aged 46.4 years old on average (±14.5); 69% were female and 41% were the patients' children. The mean score obtained on the anxiety assessment in the intervention group was 41.3±8.6, while the control group scored 50.6±9.4 (pde enfermagem a familiares de pacientes em pós-operatório imediato de cirurgia cardíaca, antes da primeira visita na sala de recuperação pós-anestésica, nos níveis de ansiedade, comparados com a orientação de rotina da unidade. ensaio clínico randomizado, realizado com familiares abordados na sala de espera, antes da primeira visita no pós-operatório imediato. Familiares alocados no grupo intervenção receberam orientações audiovisuais sobre as condições em que o paciente se encontrava naquele momento, e o grupo controle recebeu as orientações de rotina da unidade. O desfecho ansiedade foi avaliado pelo inventário IDATE. foram incluídos 210 sujeitos, 105 em cada grupo, com idade média de 46,4±14,5 anos, sendo 69% do sexo feminino e 41% filhos dos pacientes. Na avaliação da ansiedade, o escore médio para o grupo intervenção foi de 41,3±8,6 pontos e, para o grupo controle, 50,6±9,4 pontos (pde enfermagem voltada à orientação de familiares, no momento que antecede a primeira visita no pós-operatório imediato de

  4. Experiences of a Community-Based Lymphedema Management Program for Lymphatic Filariasis in Odisha State, India: An Analysis of Focus Group Discussions with Patients, Families, Community Members and Program Volunteers.

    Directory of Open Access Journals (Sweden)

    Tali Cassidy

    2016-02-01

    Full Text Available Globally 68 million people are infected with lymphatic filariasis (LF, 17 million of whom have lymphedema. This study explores the effects of a lymphedema management program in Odisha State, India on morbidity and psychosocial effects associated with lymphedema.Focus groups were held with patients (eight groups, separated by gender, their family members (eight groups, community members (four groups and program volunteers (four groups who had participated in a lymphedema management program for the past three years. Significant social, physical, and economic difficulties were described by patients and family members, including marriageability, social stigma, and lost workdays. However, the positive impact of the lymphedema management program was also emphasized, and many family and community members indicated that community members were accepting of patients and had some improved understanding of the etiology of the disease. Program volunteers and community members stressed the role that the program had played in educating people, though interestingly, local explanations and treatments appear to coexist with knowledge of biomedical treatments and the mosquito vector.Local and biomedical understandings of disease can co-exist and do not preclude individuals from participating in biomedical interventions, specifically lymphedema management for those with lymphatic filariasis. There is a continued need for gender-specific psychosocial support groups to address issues particular to men and women as well as a continued need for improved economic opportunities for LF-affected patients. There is an urgent need to scale up LF-related morbidity management programs to reduce the suffering of people affected by LF.

  5. On sensory loss amongst old family members

    DEFF Research Database (Denmark)

    Winther, Ida Wentzel; Rasmussen, Jon Dag

    family. Our tentative findings point towards a prominence of different insecurities and discomforts in social life that directly links to the decreased sensory abilities. Experiences of being ‘lost’, ‘set afloat’ and disconnected in everyday life interactions are broadly described by all of the followed...... exposition of tentative analysis and research findings we aim to initiate a discussion around central themes of the work....

  6. Coping with stigma by association and family burden among family members of people with mental illness.

    Science.gov (United States)

    van der Sanden, Remko L M; Stutterheim, Sarah E; Pryor, John B; Kok, Gerjo; Bos, Arjan E R

    2014-10-01

    In this study, we explored stigma by association, family burden, and their impact on the family members of people with mental illness. We also studied the ways in which family members coped with these phenomena. We conducted semistructured interviews with 23 immediate family members of people with mental illness. Participants reported various experiences of stigma by association and family burden. Social exclusion, being blamed, not being taken seriously, time-consuming caregiving activities, and exhaustion appeared to be the predominant forms of stigma by association and family burden experienced by the participants. The participants used problem-focused and emotion-focused coping strategies, separately or simultaneously, to cope with the negative impact of stigma by association and family burden. The results suggest that family members should have access to services to address these problems. Social, instrumental, and emotional support should be given to family members by community members and mental health professionals.

  7. Technical nursing students interacting with family members of hospitalized children

    Directory of Open Access Journals (Sweden)

    Juliana Yukari Takahashi Onishi

    Full Text Available ABSTRACT Objective: To understand technical nursing students' meaning of interacting with family members of hospitalized children. Method: Symbolic Interactionism was used as the theoretical framework and Qualitative Content Analysis was the methodological procedure. A total of eight graduates from an institution situated in the city of Osasco, Sao Paulo state, participated in this study. Data were collected through semi-structured interviews. Results: A total of five representative themes were revealed: Dealing with difficult situations with family members; Perceiving oneself to be unprepared to interact with family members; Family members being a helpful tool; Developing strategies to obtain a good interaction with family members; and Teachers being facilitators of the interaction with family members. Final considerations: To be acquainted with this experience has led to the understanding of the need to include the theme of family care in the curriculum of the Technical Nursing Course. Additionally, the present study contributed to reflections on the importance of such knowledge for this population and to the development of future studies, as this theme has been scarcely explored in the literature.

  8. Technical nursing students interacting with family members of hospitalized children.

    Science.gov (United States)

    Onishi, Juliana Yukari Takahashi; Ribeiro, Circéa Amália; Silva, Maria Cristina Ferreira Carlos Rodrigues da; Borba, Regina Issuzu Hirooka de

    2017-01-01

    To understand technical nursing students' meaning of interacting with family members of hospitalized children. Symbolic Interactionism was used as the theoretical framework and Qualitative Content Analysis was the methodological procedure. A total of eight graduates from an institution situated in the city of Osasco, Sao Paulo state, participated in this study. Data were collected through semi-structured interviews. A total of five representative themes were revealed: Dealing with difficult situations with family members; Perceiving oneself to be unprepared to interact with family members; Family members being a helpful tool; Developing strategies to obtain a good interaction with family members; and Teachers being facilitators of the interaction with family members. To be acquainted with this experience has led to the understanding of the need to include the theme of family care in the curriculum of the Technical Nursing Course. Additionally, the present study contributed to reflections on the importance of such knowledge for this population and to the development of future studies, as this theme has been scarcely explored in the literature.

  9. Space weathering of small Koronis family members

    Science.gov (United States)

    Thomas, Cristina A.; Rivkin, Andrew S.; Trilling, David E.; Enga, Marie-therese; Grier, Jennifer A.

    2011-03-01

    The space weathering process and its implications for the relationships between S- and Q-type asteroids and ordinary chondrite meteorites is an often debated topic in asteroid science. Q-type asteroids have been shown to display the best spectral match to ordinary chondrites (McFadden, L.A., Gaffey, M.J., McCord, T.B. [1985]. Science 229, 160-163). While the Q-types and ordinary chondrites share some spectral features with S-type asteroids, the S-types have significantly redder spectral slopes than the Q-types in visible and near-infrared wavelengths. This reddening of spectral slope is attributed to the effects of space weathering on the observed surface composition. The analysis by Binzel et al. (Binzel, R.P., Rivkin, A.S., Stuart, J.S., Harris, A.W., Bus, S.J., Burbine, T.H. [2004]. Icarus 170, 259-294) provided a missing link between the Q- and S-type bodies in near-Earth space by showing a reddening of spectral slope in objects from 0.1 to 5 km that corresponded to a transition from Q-type to S-type asteroid spectra, implying that size, and therefore surface age, is related to the relationship between S- and Q-types. The existence of Q-type asteroids in the main-belt was not confirmed until Mothé-Diniz and Nesvorny (Mothé-Diniz, T., Nesvorny, D. [2008]. Astron. Astrophys. 486, L9-L12) found them in young S-type clusters. The young age of these families suggest that the unweathered surface could date to the formation of the family. This leads to the question of whether older S-type main-belt families can contain Q-type objects and display evidence of a transition from Q- to S-type. To answer this question we have carried out a photometric survey of the Koronis family using the Kitt Peak 2.1 m telescope. This provides a unique opportunity to compare the effects of the space weathering process on potentially ordinary chondrite-like bodies within a population of identical initial conditions. We find a trend in spectral slope for objects 1-5 km that shows the

  10. Factors affecting frequency of communication about family health history with family members and doctors in a medically underserved population.

    Science.gov (United States)

    Kaphingst, Kimberly A; Goodman, Melody; Pandya, Chintan; Garg, Priyanka; Stafford, Jewel; Lachance, Christina

    2012-08-01

    Family history contributes to risk for many common chronic diseases. Little research has investigated patient factors affecting communication of this information. 1061 adult community health center patients were surveyed. We examined factors related to frequency of discussions about family health history (FHH) with family members and doctors. Patients who talked frequently with family members about FHH were more likely to report a family history of cancer (p =.012) and heart disease (p history of heart disease (p = .011), meet physical activity recommendations (p = .022), seek health information frequently in newspapers (p history of some diseases, those not meeting physical activity recommendations, and those who do not frequently seek health information may not have ongoing FHH discussions. Interventions are needed to encourage providers to update patients' family histories systematically and assist patients in initiating FHH conversations in order to use this information for disease prevention and control. Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.

  11. Death at the Worksite: Helping Grieving Family Members

    Science.gov (United States)

    ... Grief at Work Working Through Grief About Us Death at the Worksite: Helping Grieving Family Members By ... fatal heart attacks occur in the workplace. Other deaths — from accidents, for example — can also happen during ...

  12. Mental Wellbeing of Family Members of Autistic Adults.

    Science.gov (United States)

    Herrema, Renske; Garland, Deborah; Osborne, Malcolm; Freeston, Mark; Honey, Emma; Rodgers, Jacqui

    2017-11-01

    Family members are often the primary caregiver for autistic adults and this responsibility may impact on the carer's wellbeing and quality of life. 109 family members of autistic adults completed an online survey assessing their wellbeing relating to their caring role for their autistic relative. Family members who were supporting an autistic relative with co-occurring mental health difficulties and who they reported as unprepared for the future, self-reported higher levels of worry, depression, anxiety and stress, and poorer quality of life. These findings emphasise the importance of support for family members of autistic adults, whether through external services to support their relative or individual mental health support for the carer.

  13. Spectra of small Koronis family members

    Science.gov (United States)

    Thomas, C.; Rivkin, A.; Trilling, D.; Moskovitz, N.

    2014-07-01

    The space-weathering process and its implications for the relationships between S- and Q-type asteroids and ordinary chondrite meteorites are long-standing problems in asteroid science. Although the visible and near-infrared spectra of S- and Q-type objects qualitatively show the same absorption features and quantitatively show evidence of the same minerals, the S types display increased spectral slopes and muted absorption features compared to the Q types. This spectral mismatch is consistent with the effects of the space weathering process. Binzel et al. provided the missing link between Q- and S-type bodies in near-Earth space by showing a reddening of spectral slope in objects from 0.1 to 5 km that corresponded to the transition from Q- to S-type spectra. This result implied that size, and therefore age, is related to the relationship between Q- and S-type. The existence of Q-type objects in the main belt was not confirmed until Mothe-Diniz and Nesvorny (2008) found them in young S-type clusters. To investigate the trend from Q to S in the main belt, we examined space weathering within the old main-belt Koronis family using a spectrophotometric survey (Rivkin et al. 2011, Thomas et al. 2011). Rivkin et al. (2011) identified several potential Q-type objects within the Koronis family. Our Q-type candidates were identified using broad-band spectrophotometry and could not be taxonomically classified on that basis alone. We obtained follow-up visible and near-infrared spectral observations of our potential Q-type objects, (26970) Elias, (45610) 2000 DJ_{48}, and (37411) 2001 XF_{152}, using Gemini and Magellan. We will present the results of these spectral follow-up observations. Observations of (26970) Elias demonstrate that the object is more consistent with the average Q-type spectrum than the average S-type spectrum.

  14. Stress and Depressive Symptoms in Cancer Survivors and Their Family Members: Korea Community Health Survey, 2012.

    Science.gov (United States)

    Han, Mi Ah

    2017-09-01

    This study examined the prevalence of perceived stress and depressive symptoms in cancer survivors and their family members compared with subjects without cancer and without family members with cancer. The subjects of this cross-sectional study were adults ≥19 years old who participated in the 2012 Korea Community Health Survey. Stress and depressive symptoms in cancer survivors and their family members were assessed and compared to symptoms in control groups by chi-square tests and multiple logistic regression analyses. Of the 6783 cancer survivors, 26.9% and 8.7% reported having stress and depressive symptoms, respectively, and 27.7% and 5.9% of family members of cancer survivors reported having stress and depressive symptoms, respectively. Cancer survivors showed higher adjusted odds ratio (aOR) for stress (aOR = 1.26, 95% confidence interval (CI) = 1.16-1.37) and depressive symptoms (aOR = 1.82, 95% CI = 1.57-2.11) than subjects without cancer history. Family members of cancer survivors showed a higher OR for stress and depressive symptoms than subjects without a family member who survived cancer. Cancer survivors and family members of cancer survivors had more stress and depressive symptoms than controls. Careful management for cancer patients and their family members should include screening for stress and depression to improve mental health associated with cancer survivorship.

  15. Nurses' views of forensic care in emergency departments and their attitudes, and involvement of family members.

    Science.gov (United States)

    Linnarsson, Josefin Rahmqvist; Benzein, Eva; Årestedt, Kristofer

    2015-01-01

    To describe Nurses' views of forensic care provided for victims of violence and their families in EDs, to identify factors associated with Nurses' attitudes towards families in care and to investigate if these attitudes were associated with the involvement of patients' families in care. Interpersonal violence has serious health consequences for individuals and family members. Emergency departments provide care for victims of violence, and nurses play a key role in forensic care. However, there is limited knowledge of their views and their involvement of family members. A cross-sectional design was used with a sample of all registered nurses (n = 867) in 28 emergency departments in Sweden. A self-report questionnaire, including the instrument Families' Importance in Nursing Care - Nurses' Attitudes, was used to collect data. Descriptive statistics, multiple linear regression and ordinal regression were used to analyse data. Four hundred and fifty-seven nurses completed the questionnaire (53%). Most nurses provided forensic care, but few had specific education for this task. Policy documents and routines existed for specific patient groups. Most nurses involved family members in care although education and policy documents rarely included them. Being a woman, policy documents and own experience of a critically ill family member were associated with a positive attitude towards family. A positive attitude towards family members was associated with involving patients' families in care. Many emergency department nurses provided forensic care without having specific education, and policy documents only concerned women and children. Nurses' positive attitude to family members was not reflected in policies or education. These results can inspire clinical forensic care interventions in emergency departments. Educational efforts for nurses and policies for all groups of victims of violence are needed. Emergency departments may need to rethink how family members are included

  16. REGISTRATION OF VEHICLES IN SWITZERLAND: MEMBERS OF THE FAMILY OF A MEMBER OF THE PERSONNEL

    CERN Multimedia

    Service des Relations avec les Pays Hôtes

    1999-01-01

    The Permanent Mission of Switzerland to the International Organisations in Geneva has informed CERN that members of the family of a member of the personnel who hold a carte delégitimation or a Ci permit may not register a vehicle in Switzerland. Only those members of the family who are of Swiss nationality or hold an ordinary permit (e.g. a 'B' or 'C' permit) may register vehicles in their own names.Relations with the Host States Servicehttp://www.cern.ch/relations/Tel. 72848

  17. ICU versus Non-ICU Hospital Death: Family Member Complicated Grief, Posttraumatic Stress, and Depressive Symptoms.

    Science.gov (United States)

    Probst, Danielle R; Gustin, Jillian L; Goodman, Lauren F; Lorenz, Amanda; Wells-Di Gregorio, Sharla M

    2016-04-01

    Family members of patients who die in an ICU are at increased risk of psychological sequelae compared to those who experience a death in hospice. This study explored differences in rates and levels of complicated grief (CG), posttraumatic stress disorder (PTSD), and depression between family members of patients who died in an ICU versus a non-ICU hospital setting. Differences in family members' most distressing experiences at the patient's end of life were also explored. The study was an observational cohort. Subjects were next of kin of 121 patients who died at a large, Midwestern academic hospital; 77 died in the ICU. Family members completed measures of CG, PTSD, depression, and end-of-life experiences. Participants were primarily Caucasian (93%, N = 111), female (81%, N = 98), spouses (60%, N = 73) of the decedent, and were an average of nine months post-bereavement. Forty percent of family members met the Inventory of Complicated Grief CG cut-off, 31% met the Impact of Events Scale-Revised PTSD cut-off, and 51% met the Center for Epidemiologic Studies Depression Scale depression cut-off. There were no significant differences in rates or levels of CG, PTSD, or depressive symptoms reported by family members between hospital settings. Several distressing experiences were ranked highly by both groups, but each setting presented unique distressing experiences for family members. Psychological distress of family members did not differ by hospital setting, but the most distressing experiences encountered at end of life in each setting highlight potentially unique interventions to reduce distress post-bereavement for family members.

  18. Registered Nurses working together with family members of older people.

    Science.gov (United States)

    Weman, Karin; Fagerberg, Ingegerd

    2006-03-01

    The aim of the study was to reach a more profound understanding, through looking at nurses' working situation, of those factors that influence how nurses are able to work together with family members of older people living in nursing homes or similar facilities. Working with the care of older people as a Registered Nurse provides a varied job with many challenges. Nurses have to co-operate with family members of those in community health care. Co-operation is important and necessary for all involved. Nurses working in elder care in a geographically defined area received a questionnaire with three open-ended questions, on the difficulties and/or problems involved with working together with family members, and the positive or negative aspects of this co-operation. Analysis was carried out using the latent content analysis method. Three themes, problems within the system, interaction with families and caring in nursing work, are presented with categories and their subcategories. The nurses wanted their superior to be a nurse so that their working situation would be better understood. Appreciation from their superior and family members was also a very important part of their work as nurses in community health care. The frequent changes and the lack of time in the work of elder care often put nurses under considerable psychological pressure. For the most part family members are a resource for the elder, but sometimes they will avoid contact, which will make co-operating difficult. Registered Nurses and family members are dependent on each other in their care of the elder. Relevance to clinical practice. More attention should be paid to the working situation of Registered Nurses in community health care, and their ability to work together with family members of older people.

  19. Personal meaning in relation to daily functioning of a patient in physical therapy practice: narratives of a patient, a family member, and physical therapist.

    Science.gov (United States)

    Oosting, Ellen; Dronkers, Jaap; Hoogeboom, Thomas; van Meeteren, Nico; Speelman, Willem Marie

    2018-05-01

    To get insight into personal meaning of a person involved in a physical therapy intervention. Mrs. A, a 76-year-old woman is referred to a physical therapist (PT) for assessment of functioning and training before total hip arthroplasty (THA). The patient, her daughter, and PT were asked to write a story about their daily life. Stories were analyzed according to the narrative scheme based on a method to find meaning in daily life, which consists of four phases: 1. Motivation; 2. Competences; 3. Performance; and 4. Mrs. A was mainly motivated by her will to do enjoyable social activities and stay independent. Although she tried her best to undertake activities (performance) that made her proud (evaluation), her pain and physical limitations were anti-competences that motivated her to attend healthcare. Although the PT seemed to be aware of personal participation goals, her main motivation was to improve and evaluate functions and activities. The daughter was motivated by good relationships and did not see herself as informal caregiver. The narrative method was a valuable tool to clarify motivations, competences, and values in the process of creating personal meaning related to functioning. This knowledge could help caregivers in applying patient-centered goal-setting and treatment on a participation level. Implications for rehabilitation Personal meaning of people's functioning within their daily context can be clarified from daily life stories. This case report demonstrates that motivations and goals may differ between patient and therapist; the PT seems to focus on improving and evaluating functions and activities, while the patient seems to focus her motivations and personal meaning on participation. This approach may help in patient-centered goal-setting at the level of activities and participation.

  20. Family members' unique perspectives of the family: examining their scope, size, and relations to individual adjustment.

    Science.gov (United States)

    Jager, Justin; Bornstein, Marc H; Putnick, Diane L; Hendricks, Charlene

    2012-06-01

    Using the McMaster Family Assessment Device (Epstein, Baldwin, & Bishop, 1983) and incorporating the perspectives of adolescent, mother, and father, this study examined each family member's "unique perspective" or nonshared, idiosyncratic view of the family. We used a modified multitrait-multimethod confirmatory factor analysis that (a) isolated for each family member's 6 reports of family dysfunction the nonshared variance (a combination of variance idiosyncratic to the individual and measurement error) from variance shared by 1 or more family members and (b) extracted common variance across each family member's set of nonshared variances. The sample included 128 families from a U.S. East Coast metropolitan area. Each family member's unique perspective generalized across his or her different reports of family dysfunction and accounted for a sizable proportion of his or her own variance in reports of family dysfunction. In addition, after holding level of dysfunction constant across families and controlling for a family's shared variance (agreement regarding family dysfunction), each family member's unique perspective was associated with his or her own adjustment. Future applications and competing alternatives for what these "unique perspectives" reflect about the family are discussed. PsycINFO Database Record (c) 2012 APA, all rights reserved.

  1. Family Members' Unique Perspectives of the Family: Examining their Scope, Size, and Relations to Individual Adjustment

    Science.gov (United States)

    Jager, Justin; Bornstein, Marc H.; Diane, L. Putnick; Hendricks, Charlene

    2012-01-01

    Using the Family Assessment Device (FAD; Epstein, Baldwin, & Bishop, 1983) and incorporating the perspectives of adolescent, mother, and father, this study examined each family member's “unique perspective” or non-shared, idiosyncratic view of the family. To do so we used a modified multitrait-multimethod confirmatory factor analysis that (1) isolated for each family member's six reports of family dysfunction the non-shared variance (a combination of variance idiosyncratic to the individual and measurement error) from variance shared by one or more family members and (2) extracted common variance across each family member's set of non-shared variances. The sample included 128 families from a U.S. East Coast metropolitan area. Each family member's unique perspective generalized across his or her different reports of family dysfunction and accounted for a sizable proportion of his or her own variance in reports of family dysfunction. Additionally, after holding level of dysfunction constant across families and controlling for a family's shared variance (agreement regarding family dysfunction), each family member's unique perspective was associated with his or her own adjustment. Future applications and competing alternatives for what these “unique perspectives” reflect about the family are discussed. PMID:22545933

  2. Mental health and family relations among people who inject drugs and their family members in Vietnam.

    Science.gov (United States)

    Li, Li; Tuan, Nguyen Anh; Liang, Li-Jung; Lin, Chunqing; Farmer, Shu C; Flore, Martin

    2013-11-01

    This article explores the association of people who inject drugs and their family members in terms of mental health and family relations. The objective was to understand the family context and its impact on people who inject drugs in a family-oriented culture in Vietnam. Cross-sectional assessment data were gathered from 83 people who inject drugs and 83 of their family members recruited from four communes in Phú Thọ province, Vietnam. Depressive symptoms and family relations were measured for both people who inject drugs and family members. Internalized shame and drug-using behavior were reported by people who inject drugs, and caregiver burden was reported by family members. We found that higher level of drug using behavior of people who inject drugs was significantly associated with higher depressive symptoms and lower family relations reported by themselves as well as their family members. Family relations reported by people who inject drugs and their family members were positively correlated. The findings highlight the need for interventions that address psychological distress and the related challenges faced by family members of people who inject drugs. The article has policy implication which concludes with an argument for developing strategies that enhance the role of families in supporting behavioral change among people who inject drugs. Copyright © 2013 Elsevier B.V. All rights reserved.

  3. Strategies needed to involve men, other family members.

    Science.gov (United States)

    Barnett, B

    1998-01-01

    Women typically do not make decisions about contraceptive use and family planning on their own, and many women often have little, if any, decision-making power in the home. Strategies are therefore needed to empower women, educate family members, and involve men in reproductive health programs. Policymakers should expand the range of male services and encourage the greater use of male contraceptive methods. Furthermore, health programs should include counseling to help men and women improve their communications skills and conduct education campaigns to inform men about the roles they can play in family planning. Men should also learn about the side effects of both male and female methods, since concern over method side effects can frustrate their support of family planning. Appropriate strategies can be tailored to meet individual group needs. Programs in Madagascar, Bangladesh, Honduras, and Nepal are described as examples of how the support of family members can positively affect family planning use and reproductive health.

  4. Osteochondritis Dissecans Lesions in Family Members: Does a Positive Family History Impact Phenotypic Potency?

    Science.gov (United States)

    Gornitzky, Alex L; Mistovich, R Justin; Atuahuene, Brittany; Storey, Eileen P; Ganley, Theodore J

    2017-06-01

    Although repetitive microtrauma and athletic overuse patterns are most commonly associated with osteochondritis dissecans (OCD), recent studies have identified a potential genetic predisposition for OCD. Several case series have documented family pedigrees that support autosomal-dominant inheritance, but the families in these studies were all selected as a result of unique histories that may not accurately represent OCD inheritance patterns at large. Because there has been little investigation beyond these case reports, we aimed to describe a broader, more representative pattern of OCD inheritance applicable to all affected patients. (1) What proportion of patients treated for OCD of the knee have one or more immediate and/or extended family members with a history of OCD lesions? (2) Do patients with more phenotypically potent lesions, which we defined as patients with bilateral OCD lesions or patients who have undergone multiple procedures for OCD, have a higher frequency of affected relatives than those with less potent lesions? This retrospective study queried patient databases, diagnosis codes (International Classification of Diseases, 9th Revision), and surgical logs at a regional, tertiary care children's hospital to identify all patients treated over a 10-year period (March 2004-March 2014) by the senior author for OCD of the knee. All patients aged 0-18 years at the time of diagnosis were included. At our institution, patients with intact lesions are treated with a trial of conservative therapy; conversely, patients with a break in the articular cartilage and/or loose fragments of bone/cartilage are treated surgically. There were no OCD-specific contraindications to surgery. This search identified 543 patients. After patient identification, a questionnaire was designed that asked for the number, age, and gender of all immediate family members and the history of OCD lesions in any family member (immediate or extended). For all positive family members

  5. Si dios quiere: Hispanic families' experiences of caring for a seriously mentally ill family member.

    Science.gov (United States)

    Guarnaccia, P J; Parra, P; Deschamps, A; Milstein, G; Argiles, N

    1992-06-01

    Among Hispanics, the family is viewed as the primary care giver for seriously mentally ill family members. This paper reports on a study of minority families' conceptions of serious mental illness, of their interaction with mental health resources, and on the burdens experienced by families in caring for a seriously mentally ill family member. The focus of this paper is on Hispanic families in New Jersey, with some comparative data from other ethnic group families. Families' conceptions of serious mental illness are explored and analyzed to demonstrate the importance of concepts of nervios and fallo mental in shaping families' responses to their ill family member. Social support systems for families are also explored with particular attention to the role of religious institutions and religious healing as a major source of solace.

  6. [Study and development of a new automatic suction system (SS) of intratracheal sputum in order to improve QOL of many patients with tracheostomy mechanical ventilation (TMV) and their family members by this new autonomic SS].

    Science.gov (United States)

    Hokezu, Youichi; Yamamoto, Makoto; Tokunaga, Syuichi; Niikura, Makoto; Nagamatsu, Keiji; Kira, Jun-ichi; Fukunaga, Toshihide; Shima, Kouji; Kikuchi, Seiji; Kimura, Itaru; Kondo, Kiyohiko; Mori, Teruhiko; Goto, Katumasa; Takigami, Shigeru; Shioya, Keiichi; Uehara, Minako

    2009-11-01

    In Japan, many patients equipped with TMV are under medical treatment at home after 1990. These patients can't put out sputa in trachea, so that these patient's family members must suck these patient's intratracheal sputa all days. Mr Yamamoto and Mr Tokunaga, main researchers of this study, began the study on the automatic SS of itratracheal sputa from 1999. In first stage, They developed the intermittent SS in detaining the suction tube within tracheal cannula, monitering the intratracheal pressure, but this system takes the ventilation away from the patient. Hypoventilation caused by this SS may cause the serious accident in patient. Therefore, we remodel the SS from intermittent SS to rollerpomp-type SS continuing to suck the itratracheal sputa with low volume from 2004, and thereafter we made up the SS of piston pomp type-SS finally at 2007. We developed the tracheal cannula with double suction holes of inner and lower hole in the lower part of its cannula together with the suction machine. We think that the practical use of this automatic SS will bring these patients with TMV and their family members great benefits. We desire that the practical use of this SS will be realized as soon as possible.

  7. Family members' informal roles in end-of-life decision making in adult intensive care units.

    Science.gov (United States)

    Quinn, Jill R; Schmitt, Madeline; Baggs, Judith Gedney; Norton, Sally A; Dombeck, Mary T; Sellers, Craig R

    2012-01-01

    To support the process of effective family decision making, it is important to recognize and understand informal roles that various family members may play in the end-of-life decision-making process. To describe some informal roles consistently enacted by family members involved in the process of end-of-life decision making in intensive care units. Ethnographic study. Data were collected via participant observation with field notes and semistructured interviews on 4 intensive care units in an academic health center in the mid-Atlantic United States from 2001 to 2004. The units studied were a medical, a surgical, a burn and trauma, and a cardiovascular intensive care unit. Health care clinicians, patients, and family members. Informal roles for family members consistently observed were primary caregiver, primary decision maker, family spokesperson, out-of-towner, patient's wishes expert, protector, vulnerable member, and health care expert. The identified informal roles were part of families' decision-making processes, and each role was part of a potentially complicated family dynamic for end-of-life decision making within the family system and between the family and health care domains. These informal roles reflect the diverse responses to demands for family decision making in what is usually a novel and stressful situation. Identification and description of these informal roles of family members can help clinicians recognize and understand the functions of these roles in families' decision making at the end of life and guide development of strategies to support and facilitate increased effectiveness of family discussions and decision-making processes.

  8. The impact of awareness of terminal illness on quality of death and care decision making: a prospective nationwide survey of bereaved family members of advanced cancer patients.

    Science.gov (United States)

    Ahn, Eunmi; Shin, Dong Wook; Choi, Jin Young; Kang, Jina; Kim, Dae Kyun; Kim, Hyesuk; Lee, Eunil; Hwang, Kwan Ok; Oh, Bumjo; Cho, BeLong

    2013-12-01

    We aimed to assess whether awareness of a terminal illness can affect care decision making processes and the achievement of a good death in advanced cancer patients receiving palliative care services. Awareness of terminal illness at the time of palliative care service admission was assessed by the health care professionals during the routine initial comprehensive assessment process and was recorded in the national terminal cancer patient registry. A follow-up nationwide bereavement survey was conducted, which contained questions regarding decision making processes and the Korean version of the Good Death Inventory. Among the 345 patients included in the final analysis, the majority (68.4%) of the patients were aware of the terminal illness. Awareness of the terminal illness tended to reduce discordances in care decision making (adjusted odds ratio = 0.55; 95% CI: 0.29-1.07), and increased the patients' own decision making when there were discordances between patients and their families (adjusted odds ratio = 3.79; 95% CI: 1.31-10.94). The Good Death Inventory score was significantly higher among patients who were aware of their terminal illnesses compared with those who were not (5.04 vs. 4.80; p = 0.013) and especially in the domains of 'control over the future' (5.18 vs. 4.04; p Awareness of the terminal illness had beneficial effect on the harmonious decision making, patient autonomy, and patient's quality of death. Disclosure of terminal illness should be encouraged. Copyright © 2013 John Wiley & Sons, Ltd.

  9. "Living with dying": the evolution of family members' experience of mechanical ventilation.

    Science.gov (United States)

    Sinuff, Tasnim; Giacomini, Mita; Shaw, Rhona; Swinton, Marilyn; Cook, Deborah J

    2009-01-01

    Communication with families about mechanical ventilation may be more effective once we gain a better understanding of what families experience and understand about this life support technology when their loved ones are admitted to the intensive care unit (ICU). We conducted in-depth interviews with family members of 27 critically ill patients who required mechanical ventilation for > or = 7 days and had an estimated ICU mortality of > or = 50%. Team members reviewed transcripts independently and used grounded theory analysis. The central theme of family members' experience with mechanical ventilation was "living with dying." Initial reactions to the ventilator were of shock and surprise. Family members perceived no option except mechanical ventilation. Although the ventilator kept the patient alive, it also symbolized proximity to death. In time, families became accustomed to images of the ICU as ventilation became more familiar and routine. Their shock and horror were replaced by hope that the ventilator would allow the body to rest, heal, and recover. However, ongoing exposure to their loved one's critical illness and the new role as family spokesperson were traumatizing. Family members' experiences and their understanding of mechanical ventilation change over time, influenced by their habituation to the ICU environment and its routines. They face uncertainty about death, but maintain hope. Understanding these experiences may engender more respectful, meaningful communication about life support with families.

  10. The impact of disease on family members: a critical aspect of medical care.

    Science.gov (United States)

    Golics, Catherine Jane; Basra, Mohammad Khurshid Azam; Finlay, Andrew Yule; Salek, Sam

    2013-10-01

    Most existing health-related quality of life research concerns the impact of disease on patients. However, in several medical specialties including dermatology, oncology, and physical and mental disability, studies have been carried out investigating the impact of disease on the lives of families of patients. The aim of this paper is to review the literature which relates to the impact of disease on family members of patients. The OVIDSP Medline was selected as the primary database, Searches were limited to sources published in English. 158 papers were identified for review. The definition of "family" varied across the literature, and a broad definition was accepted in this review. This review shows that a wide variety of aspects of family members' lives can be affected, including emotional, financial, family relationships, education and work, leisure time, and social activities. Many of these themes are linked to one another, with themes including financial impact and social impact being linked to emotional impact. Some positive aspects were also identified from the literature, including family relationships growing stronger. Several instruments exist to measure the impact of illness on the family, and most are disease or specialty- specific. The impact of disease on families of patients is often unrecognised and underestimated. Taking into account the quality of life of families as well as patients can offer the clinician a unique insight into issues such as family relationships and the effect of treatment decisions on the patient's close social group of partner and family.

  11. Expression patterns of signaling lymphocytic activation molecule family members in peripheral blood mononuclear cell subsets in patients with systemic lupus erythematosus.

    Science.gov (United States)

    Karampetsou, Maria P; Comte, Denis; Kis-Toth, Katalin; Kyttaris, Vasileios C; Tsokos, George C

    2017-01-01

    Genome-wide linkage analysis studies (GWAS) studies in systemic lupus erythematosus (SLE) identified the 1q23 region on human chromosome 1, containing the Signaling Lymphocytic Activation Molecule Family (SLAMF) cluster of genes, as a lupus susceptibility locus. The SLAMF molecules (SLAMF1-7) are immunoregulatory receptors expressed predominantly on hematopoietic cells. Activation of cells of the adaptive immune system is aberrant in SLE and dysregulated expression of certain SLAMF molecules has been reported. We examined the expression of SLAMF1-7 on peripheral blood T cells, B cells, monocytes, and their respective differentiated subsets, in patients with SLE and healthy controls in a systematic manner. SLAMF1 levels were increased on both T cell and B cells and their differentiated subpopulations in patients with SLE. SLAMF2 was increased on SLE CD4+ and CD8+ T cells. The frequency of SLAMF4+ and SLAMF7+ central memory and effector memory CD8+ T cells was reduced in SLE patients. Naïve CD4+ and CD8+ SLE T cells showed a slight increase in SLAMF3 levels. No differences were seen in the expression of SLAMF5 and SLAMF6 among SLE patients and healthy controls. Overall, the expression of various SLAMF receptors is dysregulated in SLE and may contribute to the immunopathogenesis of the disease.

  12. Psychiatric worker and family members: pathways towards co-operation networks within psychiatric assistance services

    Directory of Open Access Journals (Sweden)

    Silvia Carbone

    2014-03-01

    Full Text Available The family’s role in patient care was greatly altered by Law 180. This law, introduced in Italy in 1978, led to a gradual phasing out of custodial treatment for psychiatric patients. This different mindset, which views the family as an alternative to institutionalization, leads to it being seen as an essential entity in the setting up of community service dynamics. We interviewed health professionals in order to understand obstacles of collaboration between family members and mental health care workers. The goal was to uncover actions that promote collaboration and help build alliances between families and psychiatric workers. Results showed that health professionals view the family as a therapeutic resource. Despite this view, family members were rarely included in patient treatment. The reasons is: the structures have a theoretical orientation of collaboration with the family but, for nurses not are organized a few meeting spaces with family members. Services should create moments, such as multi-family groups or groups of information, managed by nurses and not only by doctors. These occasions it might facilitate the knowledge between professionals and family members.

  13. 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

  14. Distribution and origins of members of the Family Portulacaceae ...

    African Journals Online (AJOL)

    The present day distribution of members of the family Portulacaceae shows that whilst some genera such as Portulaca L., and to some extent Montia L. and Talinum Adanson are cosmopolitan in distribution, others such as Ceraria Pearson and Stephens, Lyallia Hooker fil., Portulacaria Jacquin, Silvaea Philippi and ...

  15. [Life lessons of eight families donating organs of deceased family members].

    Science.gov (United States)

    Avilés R, Lissette; Rivera M, M Soledad; Catoni S, María Isabel

    2014-06-01

    Most organ donors are already death. Therefore family members become an essential link in the final decision for organ donation. To get acquainted about the life lessons of people who accepted donating an organ of a deceased family member. Qualitative research, in depth interviews to eight families that accepted donating an organ of a deceased family member. The interviews were analyzed using the method proposed by Streubert et al and modified by Rivera. The life lessons are described in six comprehensive categories. The painful experience changed towards the feeling that the loved one remains alive. This sensation generated a sense of pride in family members and sensitized them towards the painful experience of other people. Therefore, a desire to help and improve as humans beings was awakened. A compassionate approach towards families donating organs with improve organ donation and humanize the process.

  16. Quality of relationship between veterans with traumatic brain injury and their family members.

    Science.gov (United States)

    Winter, Laraine; Moriarty, Helene J

    2017-01-01

    The quality of the relationship between patients with many illnesses and their family members has been shown to affect the well-being of both. Yet, relationship quality has not been studied in traumatic brain injury (TBI), and giving and receiving aspects have not been distinguished. The present study of veterans with TBI examined associations between relationship quality and caregiver burden, satisfaction with caregiving, and veterans' competence in interpersonal functioning, rated by veterans and family members. In this cross-sectional study, 83 veterans and their family members were interviewed at home. Measures of quality of relationship, veterans' interpersonal competence and sociodemographics were collected for both, caregiver burden and satisfaction for family members only. As predicted, veteran-rated Q rel /Giving was associated with family-rated Q rel /Receiving, and veteran-rated Q rel /Receiving with family-rated Q rel /Giving. Lower caregiver burden and higher caregiving satisfaction were associated with higher Q rel /Receiving scores but not with Q rel /Giving scores. Veterans' interpersonal competence was associated with total Q rel as rated by either veterans or family members. Relationship quality should be included in family research in TBI, and giving and receiving aspects should be differentiated. Findings suggest that lower caregiver burden and greater satisfaction should be more achievable by increasing caregivers' sense of benefits received from the relationship.

  17. Perception of family emotional climate by family members of persons with schizophrenia.

    Science.gov (United States)

    Gandhi, Sailaxmi; Pavalur, Rajitha; Thirthalli, Jagadisha; Phillip, Mariamma

    2016-08-01

    There is a dearth of instruments to assess schizophrenia persons' Family Emotional Climate (FEC). This study aims to explore the relation between family members' personality traits and FEC. We invited a convenience sample of 50 both gender family members who were accompanying the person with schizophrenia for out-patient department (OPD) consultation to provide data on a socio-demographic proforma and the researcher prepared 'Emotional climate assessment questionnaire - caregivers' version' (ECAQ-C) as well as the Eysenck personality questionnaire. Caregivers' extroversion traits (r = .427, p = .002) were positively correlated and neuroticism traits were negatively correlated (r = -.330, p = .019) with their positive perception of FEC. There was a higher perception of positive FEC (mean scores = 65.5 ± 10.5) while caregivers seemed to perceive less negative FEC (mean scores = 36.5 ± 10.2). Caregivers with education above 11th std perceived less (χ(2) = 8.6, p = .013) of negative FEC. The findings highlight that caregivers' personality traits seem to influence the FEC. While caregivers' perception of FEC is positive in this study, those in the higher education group seem to have a better perception of FEC indicating that education also may influence FEC. © The Author(s) 2016.

  18. 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 ...

  19. Strengths of families to limit relapse in mentally ill family members

    African Journals Online (AJOL)

    Tlhalefi T. Tlhowe

    The purpose of this research was to explore and describe the strengths of .... In this review family strengths refer to qualities of families with a mentally ill .... they thought that their mentally ill family members were just acting out when ..... techniques, creative communication and praise as strengths. .... International Journal of.

  20. Family Decision Making: Benefits to Persons with Developmental Disabilities and Their Family Members

    Science.gov (United States)

    Neely-Barnes, Susan; Graff, J. Carolyn; Marcenko, Maureen; Weber, Lisa

    2008-01-01

    Family involvement in planning and choosing services has become a key intervention concept in developmental disability services. This study (N = 547) modeled patterns of family decision making and assessed benefits to persons with developmental disabilities (DDs) and their family members. A latent profile analysis identified 4 classes that were…

  1. Strengths of families to limit relapse in mentally ill family members ...

    African Journals Online (AJOL)

    Background: Relapse prevention in mental health care is important. Utilising the strengths of families can be a valuable approach in relapse prevention. Studies on family strengths have been conducted but little has been done on the strengths of family members to help limit relapse in mental health care users. The purpose ...

  2. Views of Medical Doctors Regarding the 2013 WHO Adult HIV Treatment Guidelines Indicate Variable Applicability for Routine Patient Monitoring, for Their Family Members and for Themselves, in South-Africa.

    Science.gov (United States)

    Venter, Willem Daniel Francois; Fairlie, Lee; Feldman, Charles; Cleaton-Jones, Peter; Chersich, Matthew

    2016-01-01

    South African doctors (n = 211) experienced in antiretroviral therapy use were asked via an online questionnaire about the WHO 2013 adult antiretroviral integrated guidelines, as well as clinical and personal issues, in three hypothetical scenarios: directing the Minister of Health, advising a family member requiring therapy amidst unstable antiretroviral supplies, and where doctors themselves were HIV-positive. Doctors (54%) favoured the 500 cells/μl WHO initiation threshold if advising the Minister; a third recommended retaining the 350 cells/μl threshold used at the time of the survey. However, they favoured a higher initiation threshold for their family member. Doctors were 4.9 fold more likely to initiate modern treatment, irrespective of their CD4 cell count, for themselves than for public-sector patients (95%CI odds ratio = 3.33-7.33; Pfamily and friends. Respondents were overwhelmingly in favour of continued antiretrovirals after breastfeeding. In conclusion, doctors largely supported adult WHO guidelines as public policy, although would initiate treatment at higher CD4 counts for their family and themselves. Resistance to INH-prophylaxis is unexpected and warrants investigation.

  3. Stress Reduction in Postcardiac Surgery Family Members: Implementation of a Postcardiac Surgery Tool Kit.

    Science.gov (United States)

    Breisinger, Lauren; Macci Bires, Angela; Cline, Thomas W

    The intensive care unit (ICU) can be a place of stress, anxiety, and emotional instability for both patients and families. Medical and nursing care during this acute time is patient focused, and family members are often left in the dark. Unintentional exclusion from information results in high levels of stress, anxiety, and uncertainty for families. Due to the acuity of illness, family members of cardiac surgery patients experience the highest levels of stress. Spouses may experience intense psychosomatic symptoms such as depression, anxiety, and fear for several months after the surgery. The purpose of this study was aimed at decreasing those feelings of anxiety in family members with postcardiac surgery through the use of a cardiac surgery tool kit. The study was a quality improvement project utilizing a convenience sample of 83 participants 18 years and older. Participants were asked to use the State Trait Anxiety Inventory (STAI) Form Y-1 (state anxiety) to rate their anxiety level preintervention and then again postintervention. Data were collected over a 6-month period. Descriptive data including age, education level, ethnicity, relationship, experience in the ICU, and active diagnoses of mental disorders did not affect the changes in the pre- and posttest data. A paired t test was conducted on the sample to assess changes in state anxiety, using the STAI Form Y-1. The results were statistically significant (t = 11.97, df = 81, P family members of postcardiac surgery patients.

  4. Insider Research with Family Members who have a Member Living with Rare Cancer

    Directory of Open Access Journals (Sweden)

    Jan Foster PhD

    2009-12-01

    Full Text Available In this article the author explores insider research in relation to family members facing a diagnosis of rare cancer, using her experiences as one such family member undertaking doctoral research into journeys similar to hers. The “insider” issue is explored through three realms: the ethical realm, including issues of “fitness” to undertake the research; the methodological realm, including how data are obtained and used; and the trustworthiness realm, including research rigor. The exploration of her insider experiences includes personal challenges in relation to facing familiar emotionally charged experiences, insights gained as a result of her insider status, and her ability to join with participants in ways that might not be possible for an outsider. In the paper the author challenges taken-for-granted assumptions that trustworthiness can be assured only from the position of “objective” researcher. Rather, this analysis places knowledge gained through the processes and products of research as constituted and contextualized.

  5. Necessidades de familiares de pacientes internados em unidade de cuidados intensivos Necesidades de los familiares de pacientes internados en unidad de cuidados intensivos Needs of family members of patients admitted to an intensive care unit

    Directory of Open Access Journals (Sweden)

    Marina Rumiko Maruiti

    2007-03-01

    necesidades de los pacientes, sino también con las de sus familiares.OBJECTIVE: To identify the needs of family members of patient admitted to an intensive care unit. METHODS: A sample of 39 family members participated in the study. Data were collected with a modified form of the Critical Care Family Need Inventory. RESULTS: The most frequent needs reported by family members were: to be certain that their loved ones were receiving the best treatment (89.7%, to receive concrete information about the progress of their relatives (84.6%, to speak with the physician everyday (79.5%, and to have restrooms and telephones close to the waiting room (56.4%. CONCLUSION: Beyond providing quality care to critical care patients, nursing staff must be sensitive to the needs of patients' family members as well.

  6. Stress experiences of family members of registered sex offenders.

    Science.gov (United States)

    Tewksbury, Richard; Levenson, Jill

    2009-01-01

    The collateral consequences of sex offender registration and notification (SORN) have been well established, although little evidence has supported the efficacy of SORN. Based on the belief that family members provide some of the most consistent, important, and intense forms of support for criminal offenders in general and registered sex offenders (RSOs) more specifically, the experiences of sanctions, losses, and stresses of these individuals is examined. Using survey responses from 584 individuals known to visit online support and advocacy groups for RSOs and their loved ones, this study identifies the stress levels and stressors experienced by this population. Findings show that family members of RSOs experience high levels of social isolation, fear, shame, property damage, and forced residential relocation. Perceived stress is significantly higher for those who are of lower economic means, feel isolated, have high levels of fear and shame/embarrassment, or were forced to move. (c) 2009 John Wiley & Sons, Ltd.

  7. Size distributions of member asteroids in seven Hirayama families

    International Nuclear Information System (INIS)

    Mikami, Takao; Ishida, Keiichi.

    1990-01-01

    The size distributions of asteroids in the seven Hirayama families are studied for newly assigned member asteroids in the diameter range of about 10 to 100 km. The size distributions for the different families are expressed by the power-law functions with distinctly different power-law indices. The power-law indices for families with small mean orbital inclinations are about 2.5 to 3.0. On the other hand, the power-law indices for families with large mean orbital inclinations are significantly smaller than 2.5. This indicates that the smaller asteroids were removed preferentially from these families after their formation. It is thought that the smaller asteroids left behind the families were dispersed into the main belt. It is consistent with the fact that the power-law index for the size distribution of asteroids with diameters smaller than 25 km in the main belt is larger than the power-law indices for the size distributions of asteroids in the families. This segregation due to the asteroid size can be caused by a drag force caused by the ambient matter deposited on the invariable place of the solar system during the early evolutionary stage. (author)

  8. The challenges of reintegration for service members and their families.

    Science.gov (United States)

    Danish, Steven J; Antonides, Bradley J

    2013-10-01

    The ongoing wars in Afghanistan and Iraq have posed a number of reintegration challenges to service members. Much of the research focuses on those service members experiencing psychological problems and being treated at the VA. In this article, we contend that much of the distress service members experience occurs following deployment and is a consequence of the difficulties encountered during their efforts to successfully reintegrate into their families and communities. We propose a new conceptual framework for intervening in this reintegration distress that is psycho-educational in nature as well as a new delivery model for providing such services. An example of this new intervention framework is presented. © 2013 American Orthopsychiatric Association.

  9. Distribution of transglutaminase family members in mouse whole body sections.

    Science.gov (United States)

    Tatsukawa, Hideki; Abe, Natsumi; Ohashi, Shintaro; Hitomi, Kiyotaka

    2015-11-27

    Transglutaminases (TGs) comprise a protein family in which the members catalyze the formation of isopeptide bonds between glutamine and lysine residues in various proteins. Eight enzymes have been identified and designated as factor XIII (FXIII) and TG1-7. Expression studies of four major members, i.e., FXIII, TG1, TG2, and TG3, have been performed in a relatively large number of mammalian tissues in comparison with those on the other isozymes. The structural and biochemical characteristics of these individual isozymes and expression analyses of TG family in some tissue extracts have been reported, but there have been no simultaneous comparative analyses of both their mRNA and protein expression patterns in tissues distributions. Thus, we developed novel experimental systems for in situ hybridization using cryofilm attached to whole body sections of neonatal mice, thereby obtaining data regarding the tissue distributions of the major TG isozymes. In this study, we performed the first detailed comparative analysis of the mRNA and protein distribution studies of TG family members in a wide range of mouse tissues. These data will be helpful for elucidating the unknown physiological and pathological functions of TGs. Copyright © 2015 Elsevier Inc. All rights reserved.

  10. Perspectives of family members on planning end-of-life care for terminally ill and frail older people.

    Science.gov (United States)

    van Eechoud, Ineke J; Piers, Ruth D; Van Camp, Sigrid; Grypdonck, Mieke; Van Den Noortgate, Nele J; Deveugele, Myriam; Verbeke, Natacha C; Verhaeghe, Sofie

    2014-05-01

    Advance care planning (ACP) is the process by which patients, together with their physician and loved ones, establish preferences for future care. Because previous research has shown that relatives play a considerable role in end-of-life care decisions, it is important to understand how family members are involved in this process. To gain understanding of the involvement of family members in ACP for older people near the end of life by exploring their views and experiences concerning this process. This was a qualitative research study, done with semistructured interviews. Twenty-one family members were recruited from three geriatric settings in Flanders, Belgium. The data were analyzed using the constant comparative method as proposed by the grounded theory. Family members took different positions in the ACP process depending on how much responsibility the family member wanted to take and to what extent the family member felt the patient expected him/her to play a part. The position of family members on these two dimensions was influenced by several factors, namely acknowledgment of the imminent death, experiences with death and dying, opinion about the benefits of ACP, burden of initiating conversations about death and dying, and trust in health care providers. Furthermore, the role of family members in ACP was embedded in the existing relationship patterns. This study provides insight into the different positions of family members in the end-of-life care planning of older patients with a short life expectancy. It is important for health care providers to understand the position of a family member in the ACP of the patient, take into account that family members may experience an active role in ACP as burdensome, and consider existing relationship patterns. Copyright © 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

  11. Familial idiopathic pulmonary fibrosis. Evidence of lung inflammation in unaffected family members

    International Nuclear Information System (INIS)

    Bitterman, P.B.; Rennard, S.I.; Keogh, B.A.; Wewers, M.D.; Adelberg, S.; Crystal, R.G.

    1986-01-01

    We evaluated 17 clinically unaffected members of three families with an autosomal dominant form of idiopathic pulmonary fibrosis for evidence of alveolar inflammation. Each person in the study was examined by gallium-67 scanning for a general estimate of pulmonary inflammation, and by bronchoalveolar lavage for characterization of the types of recovered cells and their state of activation. Eight of the 17 subjects had evidence of alveolar inflammation on the lavage studies. Supporting data included increased numbers of neutrophils and activated macrophages that released one or more neutrophil chemoattractants, and growth factors for lung fibroblasts--findings similar to those observed in patients with overt idiopathic pulmonary fibrosis. Four of these eight also had a positive gallium scan; in all the other clinically unaffected subjects the scan was normal. During a follow-up of two to four years in seven of the eight subjects who had evidence of inflammation, no clinical evidence of pulmonary fibrosis has appeared. These results indicate that alveolar inflammation occurs in approximately half the clinically unaffected family members at risk of inheriting autosomal dominant idiopathic pulmonary fibrosis. Whether these persons with evidence of pulmonary inflammation but no fibrosis will proceed to have clinically evident pulmonary fibrosis is not yet known

  12. Stromal-dependent tumor promotion by MIF family members.

    Science.gov (United States)

    Mitchell, Robert A; Yaddanapudi, Kavitha

    2014-12-01

    Solid tumors are composed of a heterogeneous population of cells that interact with each other and with soluble and insoluble factors that, when combined, strongly influence the relative proliferation, differentiation, motility, matrix remodeling, metabolism and microvessel density of malignant lesions. One family of soluble factors that is becoming increasingly associated with pro-tumoral phenotypes within tumor microenvironments is that of the migration inhibitory factor family which includes its namesake, MIF, and its only known family member, D-dopachrome tautomerase (D-DT). This review seeks to highlight our current understanding of the relative contributions of a variety of immune and non-immune tumor stromal cell populations and, within those contexts, will summarize the literature associated with MIF and/or D-DT. Copyright © 2014 Elsevier Inc. All rights reserved.

  13. The impact of appearance-related teasing by family members.

    Science.gov (United States)

    Keery, Helene; Boutelle, Kerri; van den Berg, Patricia; Thompson, J Kevin

    2005-08-01

    This study evaluated the prevalence and effects of teasing by family members on body dissatisfaction, eating disturbance, and psychological functioning. Self-report data were collected from 372 middle school girls who were part of a larger study in a Tampa Bay, Florida area middle school (mean age: 12.6 years; 85% Caucasian). Twenty-three percent of participants reported appearance-related teasing by a parent, and 12% were teased by a parent about being heavy. Nineteen percent of the girls reported appearance-related teasing by fathers, 13% reported appearance-related teasing by mothers, and 29% reported appearance-related teasing by siblings. After controlling for body mass index (BMI) and maternal teasing, paternal teasing was a significant predictor of body dissatisfaction, comparison, thin-ideal internalization, restriction, bulimic behaviors, self-esteem, and depression. After controlling for BMI and paternal teasing, maternal teasing was a significant predictor of depression. After controlling for BMI and maternal teasing, paternal teasing significantly increased the odds of having a sibling who teases. Girls who reported being teased by at least one sibling demonstrated significantly higher levels of body dissatisfaction, comparison, thin-ideal internalization, restriction, bulimic behaviors, depression, and significantly lower levels of self-esteem than those girls who reported they were not teased by their siblings. Frequency of teasing was associated with higher levels of negative outcomes. This study has implications for treatment and prevention of eating disorders. The results suggest that health care providers should assess appearance-related teasing in their patients' lives to identify girls who may be at risk for body image and eating disturbance and poor psychological functioning.

  14. Post-Traumatic Stress Symptoms in Post-ICU Family Members: Review and Methodological Challenges.

    Science.gov (United States)

    Petrinec, Amy B; Daly, Barbara J

    2016-01-01

    Family members of intensive care unit (ICU) patients are at risk for symptoms of post-traumatic stress disorder (PTSD) following ICU discharge. The aim of this systematic review is to examine the current literature regarding post-ICU family PTSD symptoms with an emphasis on methodological issues in conducting research on this challenging phenomenon. An extensive review of the literature was performed confining the search to English language studies reporting PTSD symptoms in adult family members of adult ICU patients. Ten studies were identified for review published from 2004 to 2012. Findings demonstrate a significant prevalence of family PTSD symptoms in the months following ICU hospitalization. However, there are several methodological challenges to the interpretation of existing studies and to the conduct of future research including differences in sampling, identification of risk factors and covariates of PTSD, and lack of consensus regarding the most appropriate PTSD symptom measurement tools and timing. © The Author(s) 2014.

  15. Family Members as Third Parties in Dyadic Family Conflict: Strategies, Alliances, and Outcomes.

    Science.gov (United States)

    Vuchinich, Samuel; And Others

    1988-01-01

    Analyzes conflicts of 52 families observed during dinner. Findings suggest that family members frequently joined dyadic conflicts, they were equally likely to attempt to end or continue conflicts, they formed alliances half of the time, and their intervention strategies were related to the patterning and outcome of the conflicts. (RJC)

  16. Asking the Stakeholders: Perspectives of Individuals With Aphasia, Their Family Members, and Physicians Regarding Communication in Medical Interactions.

    Science.gov (United States)

    Burns, Michael; Baylor, Carolyn; Dudgeon, Brian J; Starks, Helene; Yorkston, Kathryn

    2015-08-01

    The purpose of this study was to explore the experiences of patients with aphasia, their family members, and physicians related to communication during medical interactions. Face-to-face, semistructured interviews were conducted with 18 participants—6 patients with aphasia, 6 family members involved in patient care, and 6 practicing physicians. A qualitative description approach was used to collect and summarize narratives from participants' perspectives and experiences. Participants were asked about experiences with communication during medical interactions in which the family member accompanied the patient. Interviews were audio- and/or video-recorded, transcribed, and then coded to identify main themes. Patients and family members generally described their communication experiences as positive, yet all participants discussed challenges and frustrations. Three themes emerged: (a) patients and family members work as a team, (b) patients and family members want physicians to "just try" to communicate with the patient, and (c) physicians want to interact with patients but may not know how. Participants discussed the need for successful accommodation, or changing how one communicates, to help facilitate the patients' increased understanding and ability to express themselves. Over- and underaccommodation with communication were commonly reported as problems. Speech-language pathologists have a role to play in helping to improve communication during medical interactions. Implications for current speech-language pathologist practice and future directions of research are discussed.

  17. Social worker involvement in identifying problems and needs of families with mentally ill members

    Directory of Open Access Journals (Sweden)

    Kovalčíková N.

    2016-01-01

    Full Text Available The aim of the current study was to explore the impact of schizophrenia on the life of the patient and his family, in particular, which problems people with schizophrenia and their families face. We applied a qualitative research strategy and method of semi-structured interview. Qualitative analysis of the data demonstrated barriers in the working and financial areas of life of people with schizophrenia. In addition, schizophrenia negatively affects social interactions of patients which lead to their social isolation which is also derived from barriers at work. Families with this kind of patient suffer mainly in the economic sphere of life with the necessity to leave the job and take care of an ill member. These families also suffer from isolation, restriction of social contacts, reduction of free-time activities, and many other problems included within the barriers in social interactions. Family members suffer psychological stress and they badly cope with the situation if the ill member is hospitalized. In addition, the family meets with the structural discrimination in the form of lack of information about the disease, lack of day care centres network and similar barriers in communication with physicians and the other professionals.

  18. Hope: A further dimension for engaging family members of people with ABI.

    Science.gov (United States)

    Kuipers, Pim; Doig, Emmah; Kendall, Melissa; Turner, Ben; Mitchell, Marion; Fleming, Jennifer

    2014-01-01

    Family member engagement is increasingly recognised as an influential factor in the rehabilitation continuum following Acquired Brain Injury, including the inpatient setting and longer-term community integration phases. To explore the experiences of patients and family members about their involvement in brain injury rehabilitation. This study comprised individual and group interviews with 14 ex-patients and family members. Interviews explored effects of inpatient rehabilitation on family relationships. Interview audio recordings were analysed using an interpretive approach by two independent researchers. Findings clearly confirmed the significance of engaging family members in inpatient rehabilitation, and specifically reinforced the importance of informational, emotional, practical and peer support. However, the key finding of the study was the importance of hope, and the need for rehabilitation professionals to foster hope. Despite not having included any questions on this topic, all interviewees noted the importance of hope, some saw it as fundamental to positive outcomes, and many were unconvinced of rehabilitation professionals' concern to avoid false hope. Various dimensions of hope are explored. The study notes that hope has been identified as highly important in many areas beyond brain injury rehabilitation. Based on this small preliminary study, the issue of hope is seen as a key focus for future research.

  19. The relationship between tics, OC, ADHD and autism symptoms : A cross-disorder symptom analysis in Gilles de la Tourette syndrome patients and family-members

    NARCIS (Netherlands)

    van Dijk, H.M.; van de Schoot, A.G.J.; Rijkeboer, M.M.; Mathews, C.A.; Cath, D.C.

    2016-01-01

    Gilles de la Tourette's syndrome (GTS) is a disorder in which obsessive-compulsive (OC), Attention Deficit Hyperactivity Disorder (ADHD) and autism symptoms occur in up to 60% of patients, suggesting shared etiology. We explored the phenotypic structure of tic, OC, ADHD, and autism symptoms as

  20. Perceived timeliness of referral to hospice palliative care among bereaved family members in Korea.

    Science.gov (United States)

    Jho, Hyun Jung; Chang, Yoon Jung; Song, Hye Young; Choi, Jin Young; Kim, Yeol; Park, Eun Jung; Paek, Soo Jin; Choi, Hee Jae

    2015-09-01

    We aimed to explore the perceived timeliness of referral to hospice palliative care unit (HPCU) among bereaved family members in Korea and factors associated therewith. Cross-sectional questionnaire survey was performed for bereaved family members of patients who utilized 40 designated HPCUs across Korea. The questionnaire assessed whether admission to the HPCU was "too late" or "appropriate" and the Good Death Inventory (GDI). A total of 383 questionnaires were analyzed. Of participants, 25.8 % replied that admission to HPCU was too late. Patients with hepatobiliary cancer, poor performance status, abnormal consciousness level, and unawareness of terminal status were significantly related with the too late perception. Family members with younger age and being a child of the patient were more frequently noted in the too late group. Ten out of 18 GDI scores were significantly lower in the too late group. Multiple logistic regression analysis revealed patients' unawareness of terminal status, shorter stay in the HPCU, younger age of bereaved family, and lower scores for two GDI items (staying in a favored place, living without concerning death or disease) were significantly associated with the too late group. To promote timely HPCU utilization and better quality of end of life care, patients need to be informed of the terminal status and their preference should be respected.

  1. Top 10 research priorities in head and neck cancer: Results of an Alberta priority setting partnership of patients, caregivers, family members, and clinicians.

    Science.gov (United States)

    Lechelt, Leah A; Rieger, Jana M; Cowan, Katherine; Debenham, Brock J; Krewski, Bernie; Nayar, Suresh; Regunathan, Akhila; Seikaly, Hadi; Singh, Ameeta E; Laupacis, Andreas

    2018-03-01

    The epidemiology, etiology, and management of head and neck cancer are evolving. Understanding the perspectives and priorities of nonresearchers regarding treatment uncertainties is important to inform future research. Using the James Lind Alliance approach, patients, caregivers, and clinicians responded to a survey regarding their unanswered questions about treating and managing head and neck cancer. Distinct uncertainties were extracted from responses and sorted into themes. Uncertainties already answered in the literature were removed. Those remaining were ranked by patients and clinicians to develop a short list of priorities, which were discussed at a workshop and reduced to the top 10. One hundred sixty-one respondents posed 818 uncertainties, culminating in 77 for interim ranking and 27 for discussion at a workshop. Participants reached consensus on the top 10, which included questions on prevention, screening, treatment, and quality of life. Nonresearchers can effectively collaborate to establish priorities for future research in head and neck cancer. © 2017 Wiley Periodicals, Inc.

  2. In our own voice-family companion: reducing self-stigma of family members of persons with serious mental illness.

    Science.gov (United States)

    Perlick, Deborah A; Nelson, Ann H; Mattias, Kate; Selzer, James; Kalvin, Carla; Wilber, Charles H; Huntington, Brittney; Holman, Caroline S; Corrigan, Patrick W

    2011-12-01

    This article reports preliminary findings from a novel, family peer-based intervention designed to reduce self-stigma among family members of people with serious mental illness. A total of 158 primary caregivers of patients with schizophrenia were recruited from a large urban mental health facility (93 caregivers) or from a family and consumer advocacy organization (65 caregivers). Caregivers (N=122) who reported they perceived at least a moderate level of mental illness-related stigma were evaluated on measures of self-stigma, withdrawal, secrecy, anxiety, and social comparison and randomly assigned to receive one of two, one-session group interventions: a peer-led intervention (In Our Own Voice-Family Companion [IOOV-FC]) designed to stimulate group discussion or a clinician-led family education session, which delivered information about mental illness in a structured, didactic format. IOOV-FC consisted of playing a videotape of family members who describe their experiences coping with stigma, which was followed by a discussion led by two family peers who modeled sharing their own experiences and facilitated group sharing. Of 24 family members and ten consumers, 96% rated the videotape above a predetermined acceptability threshold on a 19-item scale assessing cultural sensitivity, respect for different stakeholders, relevance of content, and technical quality (α=.92). Caregivers receiving IOOV-FC with low to moderate pretreatment anxiety reported a substantial reduction in self-stigma (effect size=.50) relative to those receiving clinician-led family education (p=.017) as well as significant reductions in secrecy (p=.031). Peer-led group interventions may be more effective in reducing family self-stigma than clinician-led education, at least for persons reporting experiencing low to moderate anxiety levels on a standard questionnaire

  3. The Facilitators and Barriers to Communication between Nurses and Family Member in Intensive Care Unit in Kerman, Iran

    OpenAIRE

    Laleh loghmani; Fariba borhani; Abbas Abbaszadeh

    2014-01-01

    Introduction: The communication between nurses and patients' families is commun- ication significantly 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. Methods: This study was conducted by the grounded theory method. Participants comprised eight registered nurses and ten families. Patients were admitted to the ...

  4. Views of Medical Doctors Regarding the 2013 WHO Adult HIV Treatment Guidelines Indicate Variable Applicability for Routine Patient Monitoring, for Their Family Members and for Themselves, in South-Africa.

    Directory of Open Access Journals (Sweden)

    Willem Daniel Francois Venter

    Full Text Available South African doctors (n = 211 experienced in antiretroviral therapy use were asked via an online questionnaire about the WHO 2013 adult antiretroviral integrated guidelines, as well as clinical and personal issues, in three hypothetical scenarios: directing the Minister of Health, advising a family member requiring therapy amidst unstable antiretroviral supplies, and where doctors themselves were HIV-positive. Doctors (54% favoured the 500 cells/μl WHO initiation threshold if advising the Minister; a third recommended retaining the 350 cells/μl threshold used at the time of the survey. However, they favoured a higher initiation threshold for their family member. Doctors were 4.9 fold more likely to initiate modern treatment, irrespective of their CD4 cell count, for themselves than for public-sector patients (95%CI odds ratio = 3.33-7.33; P<0.001, although lower if limited to stavudine-containing regimens. Doctors were equally concerned about stavudine-induced lactic acidosis and lipoatrophy. The majority (84% would use WHO-recommended first-line therapy, with concerns split between tenofovir-induced nephrotoxicity (55%, and efavirenz central nervous system effects (29%. A majority (61%, if HIV-positive, would pay for a pre-initiation resistance test, use influenza-prophylaxis (85%, but not INH-prophylaxis (61%, and treat their cholesterol and blood pressure concerns conventionally (63% and 60%. Over 60% wanted viral loads and creatinine measured six monthly. A third felt CD4 monitoring only necessary if clinically indicated or if virological failure occurred. They would use barrier prevention (83%, but not recommend pre-exposure prophylaxis, if their sexual partner was HIV-negative (68%. A minority would be completely open about their HIV status, but the majority would disclose to their sexual partners, close family and friends. Respondents were overwhelmingly in favour of continued antiretrovirals after breastfeeding. In conclusion, doctors

  5. HTLV-1 infection is associated with a history of active tuberculosis among family members of HTLV-1-infected patients in Peru.

    Science.gov (United States)

    Verdonck, K; González, E; Schrooten, W; Vanham, G; Gotuzzo, E

    2008-08-01

    The purpose of this study was to assess the association between human T-lymphotropic virus 1 (HTLV-1) and a lifetime history of active tuberculosis (TB) among relatives of HTLV-1-infected patients. We reviewed clinical charts of all relatives of HTLV-1-infected index cases who attended our institute in Lima from 1990-2004. The data of 1233 relatives was analysed; 394 (32.0%) were HTLV-1 positive. Eighty-one subjects (6.6%) had a history of active TB, including 45/394 (11.4%) HTLV-1-positive and 36/839 (4.3%) HTLV-1-negative relatives (Phistory: HTLV-1 infection (adjusted OR 2.5, 95% CI 1.6-3.9), age (adjusted OR 1.3, 95% CI 1.1-1.5 per 10-year age increase) and relation to the index case (adjusted OR 2.6, 95% CI 1.3-5.1, for siblings vs. spouses of index cases). In conclusion, HTLV-1 infection may increase the susceptibility to active TB. In populations where both infections are frequent, such an association could affect the dynamics of TB.

  6. The incidence of tuberculosis transmission among family members and outside households.

    Science.gov (United States)

    Kozińska, Monika; Augustynowicz-Kopeć, Ewa

    2016-01-01

    The risk of Mycobacterium tuberculosis complex (MTBC) infection is correlated with the concentration of infectious particles and exposure time. In closed populations, healthy people staying in very frequent, close and prolonged contact with a smear-positive person, become infected and represent another link in the chain of transmission of the disease. Therefore, in the fight against tuberculosis, an important element is quick identification of the patient and potentially infected people from his environment. In epidemiological investigation of tuberculosis (TB), family members are brought under special control as they are particularly exposed to transmission of infectious diseases. The study included 150 patients with bacteriologically confirmed tuberculosis who were members of 59 families. In the years 2003-2013 this population represented all TB cases detected in Poland in a family environment.Three PCR-based genotyping methods: spoligotyping, IS6110-Mtb1-Mtb2 PCR and MIRU-VNTR typing were used. Of 150 patients, 138 could be assigned to intra-household transmission on the basis of identical DNA fingerprints upon a combined typing approach. For 12 patients in 6 households, the M. tuberculosis isolates were clearly distinct in individual analysis - IS6110-Mtb1-Mtb2 PCR, spoligotyping or MIRU-VNTR typing or in three genotyping methods, suggesting that these patients were infected by the sources in the community. The analysis confirmed the transmission of tuberculosis among members of 53 families. In the remaining 6 families the source of infection were people outside the households. In all families with young children, strains isolated from them have identical DNA patterns as strains obtained from their adult caregivers. To confirm the transmission of TB in the study population of patients, epidemiological analysis required the addition of a genotyping methods characterised by high discriminatory power.

  7. Witnesses to Transformation: Family Member Experiences Providing Individualized Music to Their Relatives with Dementia

    Science.gov (United States)

    Johnston, Elizabeth; Rasmusson, Xeno; Foyil, Barbara; Shopland, Patricia

    2017-01-01

    Content analysis of 35 family members stories found that sharing individualized music enhanced memory, mood and provided interactive opportunities, where family members connected and communicated with relatives who had dementia. Technology supports a positive new role for family members, who often use MP3 players (e.g. iPods), headphones,…

  8. "You Needed to Rehab...Families as Well": Family Members' Own Goals for Aphasia Rehabilitation

    Science.gov (United States)

    Howe, Tami; Davidson, Bronwyn; Worrall, Linda; Hersh, Deborah; Ferguson, Alison; Sherratt, Sue; Gilbert, Jocelyn

    2012-01-01

    Background: Aphasia affects family members in addition to the individuals with the communication disorder. In order to develop appropriate services for the relatives of people with aphasia post-stroke, their rehabilitation goals need to be identified. Aim: The aim of the current investigation was to identify the rehabilitation goals that family…

  9. The Effect of Providing Life Support on Nurses' Decision Making Regarding Life Support for Themselves and Family Members in Japan.

    Science.gov (United States)

    Shaku, Fumio; Tsutsumi, Madoka

    2016-12-01

    Decision making in terminal illness has recently received increased attention. In Japan, patients and their families typically make decisions without understanding either the severity of illness or the efficacy of life-supporting treatments at the end of life. Japanese culture traditionally directs the family to make decisions for the patient. This descriptive study examined the influence of the experiences of 391 Japanese nurses caring for dying patients and family members and how that experience changed their decision making for themselves and their family members. The results were mixed but generally supported the idea that the more experience nurses have in caring for the dying, the less likely they would choose to institute lifesupport measures for themselves and family members. The results have implications for discussions on end-of-life care. © The Author(s) 2016.

  10. Impaired insulin-induced site-specific phosphorylation of TBC1 domain family, member 4 (TBC1D4) in skeletal muscle of type 2 diabetes patients is restored by endurance exercise-training

    DEFF Research Database (Denmark)

    Vind, B. F.; Pehmøller, Christian; Treebak, Jonas Thue

    2011-01-01

    AIMS/HYPOTHESIS: Insulin-mediated glucose disposal rates (R (d)) are reduced in type 2 diabetic patients, a process in which intrinsic signalling defects are thought to be involved. Phosphorylation of TBC1 domain family, member 4 (TBC1D4) is at present the most distal insulin receptor signalling...... event linked to glucose transport. In this study, we examined insulin action on site-specific phosphorylation of TBC1D4 and the effect of exercise training on insulin action and signalling to TBC1D4 in skeletal muscle from type 2 diabetic patients. METHODS: During a 3 h euglycaemic-hyperinsulinaemic (80...... mU min(-1) m(-2)) clamp, we obtained M. vastus lateralis biopsies from 13 obese type 2 diabetic and 13 obese, non-diabetic control individuals before and after 10 weeks of endurance exercise-training. RESULTS: Before training, reductions in insulin-stimulated R (d), together with impaired insulin...

  11. 29 CFR 825.124 - Needed to care for a family member or covered servicemember.

    Science.gov (United States)

    2010-07-01

    ..., DEPARTMENT OF LABOR OTHER LAWS THE FAMILY AND MEDICAL LEAVE ACT OF 1993 Coverage Under the Family and Medical Leave Act § 825.124 Needed to care for a family member or covered servicemember. (a) The medical... serious health condition, the family member is unable to care for his or her own basic medical, hygienic...

  12. Follow-Up Study to Family Members' Reactions to the Initial Special Education Meeting

    Science.gov (United States)

    Ingalls, Lawrence; Hammond, Helen; Paez, Carlos; Rodriguez, Ivan

    2016-01-01

    Family involvement is a central component of Individuals with Disabilities Education Act (IDEA). Family members are to be integrated in all aspects of the special education process. At the onset, of family involvement, it is imperative for educators to be aware of possible reactions family members may experience in this initial stage. This…

  13. Faustoviruses: Comparative genomics of new Megavirales family members

    Directory of Open Access Journals (Sweden)

    Samia eBenamar

    2016-02-01

    Full Text Available An emerging interest for the giant virus discovery process, genome sequencing and analysis has allowed an expansion of the number of known Megavirales members. Using the protist Vermamoeba sp. as cell support, a new giant virus named Faustovirus has been isolated. In this study, we describe the genome sequences of nine Faustoviruses and build a genomic comparison in order to have a comprehensive overview of genomic composition and diversity among this new virus family. The average sequence length of these viruses is 467,592.44 bp (ranging from 455,803 bp to 491,024 bp, making them the fourth largest Megavirales genome after Mimiviruses, Pandoraviruses and Pithovirus sibericum. Faustovirus genomes displayed an average G+C content of 37.14 % (ranging from 36.22% to 39.59% which is close to the G+C content range of the Asfarviridae genomes (38%. The proportion of best matches and the phylogenetic analysis suggest a shared origin with Asfarviridae without belonging to the same family. The core-gene-based phylogeny of Faustoviruses study has identified four lineages. These results were confirmed by the analysis of amino acids and COGs category distribution. The diversity of the gene composition of these lineages is mainly explained by gene deletion or acquisition and some exceptions for gene duplications. The high proportion of best matches from Bacteria and Phycodnaviridae on the pan-genome and unique genes may be explained by an interaction occurring after the separation of the lineages. The Faustovirus core-genome appears to consolidate the surrounding of 207 genes whereas the pan-genome is described as an open pan-genome, its enrichment via the discovery of new Faustoviruses is required to better seize all the genomic diversity of this family.

  14. Female children with incarcerated adult family members at risk for lifelong neurological decline.

    Science.gov (United States)

    Brewer-Smyth, Kathleen; Pohlig, Ryan T; Bucurescu, Gabriel

    2016-07-01

    A secondary analysis of data from adult female prison inmates in the mid-Atlantic United States defined relationships between having incarcerated adult family members during childhood and neurological outcomes. Of 135 inmates, 99 (60%) had one or more incarcerated adult family members during childhood. Regression analyses revealed that having incarcerated adult family members was related to greater frequency and severity of childhood abuse and higher incidence of neurological deficits in adulthood, especially related to traumatic brain injuries, compared to those without incarcerated adult family members. Along with being role models, adult family members impact the neurological health of children throughout their life-span.

  15. Female children with incarcerated adult family members at risk for life-long neurological decline

    Science.gov (United States)

    Brewer-Smyth, Kathleen; Pohlig, Ryan T.; Bucurescu, Gabriel

    2016-01-01

    A secondary analysis of data from adult female prison inmates in the mid-Atlantic United States defined relationships between having incarcerated adult family members during childhood and neurological outcomes. Of 135 inmates, 99(73%) had one or more incarcerated adult family members during childhood. Regression analyses revealed that having incarcerated adult family members was related to greater frequency and severity of childhood abuse and higher incidence of neurological deficits in adulthood, especially related to traumatic brain injuries, compared to those without incarcerated adult family members. Along with being role models, adult family members impact the neurological health of children throughout their lifespan. PMID:26788781

  16. A content analysis of emotional concerns expressed at the time of receiving a cancer diagnosis: An observational study of consultations with adolescent and young adult patients and their family members.

    Science.gov (United States)

    Korsvold, Live; Mellblom, Anneli Viktoria; Finset, Arnstein; Ruud, Ellen; Lie, Hanne Cathrine

    2017-02-01

    Little is known about the emotional concerns expressed by adolescent and young adult (AYA) patients in consultations when a diagnosis of cancer is delivered. Here, we investigated the content of such concerns and how health care providers respond to them. We audio-recorded nine consultations with AYA cancer patients (ages: 12-25 years) at the time of diagnosis. We have previously identified and coded 135 emotional concerns and the responses to these in the nine consultations using the Verona Coding Definitions of Emotional Sequences (VR-CoDES) framework. Here, we used qualitative content analysis to study these emotional concerns and categorize them according to overarching themes. We then quantitatively explored associations between the themes of the concerns and whether the responses to them varied according to their themes. We identified four themes for the content of concerns: "Side-effects/late-effects" (39%), "What happens in the near future/practical aspects" (16%), "Fear" (27%) and "Sadness" (17%) (e. g. crying, sighing or other sounds that expressed sadness). Health care providers' responses did not appear to vary according to the different themes of concerns, but typically consisted of providing medical information. The content analysis revealed that patients and family members expressed a wide range of emotional concerns. Health care providers tended to respond to the content-aspect of the concerns, but did rarely explicitly acknowledge the affective-aspect of the concerns. The effect of responses to patients' emotional concerns in the important first consultations about the cancer diagnosis and planned treatment should be investigated in future studies. Copyright © 2016 Elsevier Ltd. All rights reserved.

  17. Mental Health and Family Relations: Correlated Reports from People Who Inject Drugs and their Family Members in Vietnam

    Science.gov (United States)

    Li, Li; Tuan, Nguyen Anh; Liang, Li-Jung; Lin, Chunqing; Farmer, Shu C.; Flore, Martin

    2013-01-01

    Background This article explores the association of people who inject drugs and their family members in terms of mental health and family relations. The objective was to understand the family context and its impact on people who inject drugs in a family-oriented culture in Vietnam. Methods Cross-sectional assessment data were gathered from 83 people who inject drugs and 83 of their family members recruited from four communes in Phú Thọ province, Vietnam. Depressive symptoms and family relations were measured for both people who inject drugs and family members. Internalized shame and drug-using behavior were reported by people who inject drugs, and caregiver burden was reported by family members. Results We found that higher level of drug using behavior of people who inject drugs was significantly associated with higher depressive symptoms and lower family relations reported by themselves as well as their family members. Family relations reported by people who inject drugs and their family members were positively correlated. Conclusion The findings highlight the need for interventions that address psychological distress and the related challenges faced by family members of people who inject drugs. The article has policy implication which concludes with an argument for developing strategies that enhance the role of families in supporting behavioral change of people who inject drugs. PMID:23910167

  18. Idiopathic avascular necrosis of the femoral heads in five members of a Moroccan family.

    Science.gov (United States)

    Sekkat, Jihane; Rachidi, Ouafaa; Janani, Saadia; Mkinsi, Ouafaa

    2012-10-01

    Avascular necrosis (AVN) is idiopathic in about 40% of cases. The pathophysiology of avascular necrosis remains incompletely elucidated. Here, we report a case that underlines the role for inherited factors in AVN of the femoral heads. Idiopathic AVN of the femoral heads occurred in five members of the same family (a woman, her two paternal aunts, her male paternal cousin and her female paternal cousin) at a mean age of 42.4 years (range, 33-58 years). Standard pelvic radiographs showed Arlet and Ficat stage 4 AVN in three patients and stage 3 in two patients. None of the patients had a history of glucocorticoid therapy, alcohol abuse, or trauma. All five patients underwent investigations for a cause, including blood cell counts, a lipid profile, coagulation tests, testing for antinuclear antibodies, hemoglobin electrophoresis, ultrasonography of the abdomen, and standard radiographs of the long limb bones. The results were normal or negative, ruling out known hereditary causes of AVN such as sickle cell anemia and Gaucher disease. Many cases of familial AVN of the femoral head have been described in patients with sickle cell anemia or Gaucher disease. However, only five families with idiopathic familial AVN of the femoral heads have been reported (three in the US and two in Taiwan). All the patients in these families had isolated bilateral AVN of the femoral heads without AVN at other sites. Copyright © 2012. Published by Elsevier SAS.

  19. Care and caring in the intensive care unit: Family members' distress and perceptions about staff skills, communication, and emotional support.

    Science.gov (United States)

    Carlson, Eve B; Spain, David A; Muhtadie, Luma; McDade-Montez, Liz; Macia, Kathryn S

    2015-06-01

    Family members of intensive care unit (ICU) patients are sometimes highly distressed and report lower satisfaction with communication and emotional support from staff. Within a study of emotional responses to traumatic stress, associations between family distress and satisfaction with aspects of ICU care were investigated. In 29 family members of trauma patients who stayed in an ICU, we assessed symptoms of depression and posttraumatic stress disorder (PTSD) during ICU care. Later, family members rated staff communication, support, and skills and their overall satisfaction with ICU care. Ratings of staff competence and skills were significantly higher than ratings of frequency of communication, information needs being met, and support. Frequency of communication and information needs being met were strongly related to ratings of support (rs = .75-.77) and staff skills (rs = .77-.85), and aspects of satisfaction and communication showed negative relationships with symptoms of depression (rs = -.31 to -.55) and PTSD (rs = -.17 to -.43). Although satisfaction was fairly high, family member distress was negatively associated with several satisfaction variables. Increased understanding of the effects of traumatic stress on family members may help staff improve communication and increase satisfaction of highly distressed family members. Published by Elsevier Inc.

  20. MRAS: A Close but Understudied Member of the RAS Family.

    Science.gov (United States)

    Young, Lucy C; Rodriguez-Viciana, Pablo

    2018-01-08

    MRAS is the closest relative to the classical RAS oncoproteins and shares most regulatory and effector interactions. However, it also has unique functions, including its ability to function as a phosphatase regulatory subunit when in complex with SHOC2 and protein phosphatase 1 (PP1). This phosphatase complex regulates a crucial step in the activation cycle of RAF kinases and provides a key coordinate input required for efficient ERK pathway activation and transformation by RAS. MRAS mutations rarely occur in cancer but deregulated expression may play a role in tumorigenesis in some settings. Activating mutations in MRAS (as well as SHOC2 and PP1) do occur in the RASopathy Noonan syndrome, underscoring a key role for MRAS within the RAS-ERK pathway. MRAS also has unique roles in cell migration and differentiation and has properties consistent with a key role in the regulation of cell polarity. Further investigations should shed light on what remains a relatively understudied RAS family member. Copyright © 2018 Cold Spring Harbor Laboratory Press; all rights reserved.

  1. Redundant roles of PRDM family members in zebrafish craniofacial development.

    Science.gov (United States)

    Ding, Hai-Lei; Clouthier, David E; Artinger, Kristin B

    2013-01-01

    PRDM proteins are evolutionary conserved Zn-Finger transcription factors that share a characteristic protein domain organization. Previous studies have shown that prdm1a is required for the specification and differentiation of neural crest cells in the zebrafish. Here we examine other members of this family, specifically prdm3, 5, and 16, in the differentiation of the zebrafish craniofacial skeleton. prdm3 and prdm16 are strongly expressed in the pharyngeal arches, while prdm5 is expressed specifically in the area of the forming neurocranium. Knockdown of prdm3 and prdm16 results in a reduction in the neural crest markers dlx2a and barx1 and defects in both the viscerocranium and the neurocranium. The knockdown of prdm3 and prdm16 in combination is additive in the neurocranium, but not in the viscerocranium. Injection of sub-optimal doses of prdm1a with prdm3 or prdm16 Morpholinos together leads to more severe phenotypes in the viscerocranium and neurocranium. prdm5 mutants have defects in the neurocranium and prdm1a and prdm5 double mutants also show more severe phenotypes. Overall, our data reveal that prdm3, 5, and 16 are involved in the zebrafish craniofacial development and that prdm1a may interact with prdm3, 5, and 16 in the formation of the craniofacial skeleton in zebrafish. Copyright © 2012 Wiley Periodicals, Inc.

  2. Longitudinal Trajectories of Health Related Quality of Life in Danish Family Members of Individuals with Severe Brain Injury

    DEFF Research Database (Denmark)

    Norup, Anne; Snipes, Daniel J.; Siert, Lars

    2013-01-01

    – Emotional scores were higher when patients had high Rancho Los Amigos Scale scores at admission to early intensive rehabilitation in hospital. These results suggest that the acute and sub-acute periods after brain injury are an extremely difficult time psychologically for many families, and family......Scant research has examined health-related quality of life (HRQoL) in family members of patients with severe brain injury, even less has been done in Scandinavian countries, and none has examined this construct longitudinally. The current study therefore used multilevel modelling to investigate...... the trajectories of HRQoL in 94 Danish family members of patients with severe brain injury at five time points, beginning at the patient's stay in a neuro intensive care unit through one year after injury. The family members’ HRQoL scores significantly and strongly increased over time, and Role Limitations...

  3. Still Searching: A Meta-Synthesis of a Good Death from the Bereaved Family Member Perspective

    Directory of Open Access Journals (Sweden)

    Kelly E. Tenzek

    2017-04-01

    Full Text Available The concept of a good death continues to receive attention in end-of-life (EOL scholarship. We sought to continue this line of inquiry related to a good death by conducting a meta-synthesis of published qualitative research studies that examined a good death from the bereaved family member’s perspective. Results of the meta-synthesis included 14 articles with 368 participants. Based on analysis, we present a conceptual model called The Opportunity Model for Presence during the EOL Process. The model is framed in socio-cultural factors, and major themes include EOL process engagement with categories of healthcare participants, communication and practical issues. The second theme, (discontinuity of care, includes categories of place of care, knowledge of family member dying and moment of death. Both of these themes lead to perceptions of either a good or bad death, which influences the bereavement process. We argue the main contribution of the model is the ability to identify moments throughout the interaction where family members can be present to the EOL process. Recommendations for healthcare participants, including patients, family members and clinical care providers are offered to improve the quality of experience throughout the EOL process and limitations of the study are discussed.

  4. Proposed regulations could limit access to affordable health coverage for workers' children and family members.

    Science.gov (United States)

    Jacobs, Ken; Graham-Squire, Dave; Roby, Dylan H; Kominski, Gerald F; Kinane, Christina M; Needleman, Jack; Watson, Greg; Gans, Daphna

    2011-12-01

    Key Findings. The Patient Protection and Affordable Care Act (ACA) is designed to offer premium subsidies to help eligible individuals and their families purchase insurance coverage when affordable job-based coverage is not available. However, the law is unclear on how this affordability protection is applied in those instances where self-only coverage offered by an employer is affordable but family coverage is not. Regulations recently proposed by the Department of the Treasury would make family members ineligible for subsidized coverage in the exchange if an employee is offered affordable self-only coverage by an employer, even if family coverage is unaffordable. This could have significant financial consequences for low- and moderate-income families that fall in this gap. Using an alternative interpretation of the law could allow the entire family to enter the exchange when family coverage is unaffordable, which would broaden access to coverage. However, this option has been cited as cost prohibitive. In this brief we consider a middle ground alternative that would base eligibility for the individual worker on the cost of self-only coverage, but would use the additional cost to the employee for family coverage as the basis for determining affordability and eligibility for subsidies for the remaining family members. We find that: Under the middle ground alternative scenario an additional 144,000 Californians would qualify for and use premium subsidies in the California Health Benefit Exchange, half of whom are children. Less than 1 percent of those with employer-based coverage would move to subsidized coverage in the California Health Benefit Exchange as a result of having unaffordable coverage on the job.

  5. Experiences of the families concerning organ donation of a family member with brain death

    Science.gov (United States)

    Yousefi, Hojatollah; Roshani, Asieh; Nazari, Fatemeh

    2014-01-01

    Background: In recent years, the lack of organ for transplantation has resulted in health planners and authorities in all countries, including Iran, paying serious attention to the issue. Despite the above-mentioned fact, families with a member affected by brain death are not interested in organ donation. Objective: This study is aimed at making an investigation into the decision-making process of organ donation in families with brain death. Also, the research is aimed at investigating how the deterrent and facilitating factors in the process of organ donation can be made. Materials and Methods: The current research is a qualitative study with descriptive exploratory approach. Data were collected through unstructured interviews with 10 family members who gave consent to organ donation of their family members in 2012. Purposeful sampling processes began in March 2012 and lasted up to June 2012. Simultaneously, thematic approach was used in analyzing the data. Results: Data analysis led to finding 24 categories and 11 themes, which fell into two categories: facilitating and deterrent factors. The five main deterrent themes included the five themes of prohibiting factors that were shock, hope for recovery, unknown process, and conflict of opinions, and worrying association. The six main facilitating themes included humanistic desires, immortality, culture making, satisfaction of the deceased, assurance, and eternal honor. Conclusion: The findings indicated that there is ambiguity and different interpretations on brain death. The research also showed that using the experiences of donator families can provide practical and applied solutions to facilitate the process of organ donation and solve the problems faced by the health care system. PMID:24949074

  6. Experiences of the families concerning organ donation of a family member with brain death.

    Science.gov (United States)

    Yousefi, Hojatollah; Roshani, Asieh; Nazari, Fatemeh

    2014-05-01

    In recent years, the lack of organ for transplantation has resulted in health planners and authorities in all countries, including Iran, paying serious attention to the issue. Despite the above-mentioned fact, families with a member affected by brain death are not interested in organ donation. This study is aimed at making an investigation into the decision-making process of organ donation in families with brain death. Also, the research is aimed at investigating how the deterrent and facilitating factors in the process of organ donation can be made. The current research is a qualitative study with descriptive exploratory approach. Data were collected through unstructured interviews with 10 family members who gave consent to organ donation of their family members in 2012. Purposeful sampling processes began in March 2012 and lasted up to June 2012. Simultaneously, thematic approach was used in analyzing the data. Data analysis led to finding 24 categories and 11 themes, which fell into two categories: facilitating and deterrent factors. The five main deterrent themes included the five themes of prohibiting factors that were shock, hope for recovery, unknown process, and conflict of opinions, and worrying association. The six main facilitating themes included humanistic desires, immortality, culture making, satisfaction of the deceased, assurance, and eternal honor. The findings indicated that there is ambiguity and different interpretations on brain death. The research also showed that using the experiences of donator families can provide practical and applied solutions to facilitate the process of organ donation and solve the problems faced by the health care system.

  7. Cardiopulmonary resuscitation training of family members before hospital discharge using video self-instruction: a feasibility trial.

    Science.gov (United States)

    Blewer, Audrey L; Leary, Marion; Decker, Christopher S; Andersen, James C; Fredericks, Amanda C; Bobrow, Bentley J; Abella, Benjamin S

    2011-09-01

    Bystander cardiopulmonary resuscitation (CPR) is a crucial therapy for sudden cardiac arrest (SCA), yet rates of bystander CPR are low. This is especially the case for SCA occurring in the home setting, as family members of at-risk patients are often not CPR trained. To evaluate the feasibility of a novel hospital-based CPR education program targeted to family members of patients at increased risk for SCA. Prospective, multicenter, cohort study. Inpatient wards at 3 hospitals. Family members of inpatients admitted with cardiac-related diagnoses. Family members were offered CPR training via a proctored video-self instruction (VSI) program. After training, CPR skills and participant perspectives regarding their training experience were assessed. Surveys were conducted one month postdischarge to measure the rate of "secondary training" of other individuals by enrolled family members. At the 3 study sites, 756 subjects were offered CPR instruction; 280 agreed to training and 136 underwent instruction using the VSI program. Of these, 78 of 136 (57%) had no previous CPR training. After training, chest compression performance was generally adequate (mean compression rate 90 ± 26/minute, mean depth 37 ± 12 mm). At 1 month, 57 of 122 (47%) of subjects performed secondary training for friends or family members, with a calculated mean of 2.1 persons trained per kit distributed. The hospital setting offers a unique "point of capture" to provide CPR instruction to an important, undertrained population in contact with at-risk individuals. Copyright © 2010 Society of Hospital Medicine.

  8. Military service absences and family members' mental health: A timeline followback assessment.

    Science.gov (United States)

    Rodriguez, Aubrey J; Margolin, Gayla

    2015-08-01

    Although military service, and particularly absence due to deployment, has been linked to risk for depression and anxiety among some spouses and children of active duty service members, there is limited research to explain the heterogeneity in family members' reactions to military service stressors. The current investigation introduces the Timeline Followback Military Family Interview (TFMFI) as a clinically useful strategy to collect detailed time-linked information about the service member's absences. Two dimensions of parent absence--the extent to which absences coincide with important family events and cumulative time absent--were tested as potential risks to family members' mental health. Data from 70 mother-adolescent pairs revealed that the number of important family events missed by the service member was linked to elevated youth symptoms of depression, even when accounting for the number of deployments and cumulative duration of the service member's absence. However, youth who reported more frequent contact with the service member during absences were buffered from the effects of extensive absence. Mothers' symptoms were associated with the cumulative duration of the service members' time away, but not with family events missed by the service member. These results identify circumstances that increase the risk for mental health symptoms associated with military family life. The TFMFI provides an interview-based strategy for clinicians wishing to understand military family members' lived experience during periods of service-member absence. (c) 2015 APA, all rights reserved).

  9. Descobrindo a Doença de Parkinson: impacto para o parkinsoniano e seu familiar Descubriendo la Enfermedad de Parkinson: impacto para el parkinsoniano y su familiar Diagnosed with Parkinson's Diesease: impact on patients and family members

    Directory of Open Access Journals (Sweden)

    Fabiana Magalhães Navarro Peternella

    2009-02-01

    Full Text Available Estudo de natureza qualitativa, com o objetivo de compreender o impacto do diagnóstico de Parkinson para o individuo e família. Os dados foram coletados no período de Outubro a Dezembro de 2007, junto a 20 indivíduos residentes em Maringá - PR, sendo dez parkinsonianos e seu familiar mais próximo, por meio de entrevista semi-estruturada. Na análise dos dados emergiram dois temas: "Descobrindo-se portador de doença de Parkinson" e "Percalços e sentimentos após o diagnostico", os quais revelam que a falta de conhecimento sobre a doença ainda é muito grande e que a qualidade do primeiro contato com o diagnóstico é crucial na determinação e comportamento dos indivíduos frente à doença.Estudio de naturaleza cualitativa, desarrollado con el objetivo de comprender el impacto del diagnóstico de Parkinson para el individuo y familia. Los datos fueron recogidos en el período de Octubre a Diciembre de 2007, junto a 20 individuos residentes en Maringá - PR, siendo diez parkinsonianos y su familiar más próximo, por medio de entrevista semiestructurada. En el análisis de los datos emergieron dos temas: "Descubriéndose portador de enfermedad de Parkinson: una larga trayectoria" y "Percances y sentimientos después del diagnóstico", los cuales revelan que la falta de conocimiento sobre la enfermedad aún es muy grande en la población en general y que la calidad del primer contacto con el diagnóstico es crucial en la determinación y comportamiento de los individuos frente la enfermedad.This was a qualitative nature, developed with the objective of understanding the impact of a Parkinson's diagnosis on the individual and the family. Data were collected between October and December 2007, from 20 individuals residing in Maringá, PR - 10 Parkinson's patients and their closest family member - using semi-structured interviews. From the analysis of the data, two themes emerged: "Coming to terms as a Parkinson's patient: a long path" and

  10. Influence of Posttraumatic Stress Disorder of the Fathers on other Family MembersInfluence of Posttraumatic Stress Disorder of the Fathers on other Family Members

    Directory of Open Access Journals (Sweden)

    Amra Zalihić

    2008-02-01

    Full Text Available The purpose of this work is to analyze the frequency of depression and anxiety and children behaviour in families whose heads of the family (father suffer from post-traumatic stress disorder (PTSD. The study was conducted from September 2005 until July 2006, with patients living in Mostar. The frequency of depression and anxiety in family members older than 18 years, and changes of the behaviour in children younger than 18 years of age were measured. The data were collected from 60 men and their families who had been diagnosed with PTSD by their psychiatrist. The control group was formed using matching criteria (age of the head of the family, his education, religion, family income and number of children. In this study, three questionnaires were used: one specially designed for this study, covering general information about family members, and a personal opinion of each family member about the family situation and relations within the family; Hopkins symptoms checklist - 25 (HSCL-25 for evaluation of depression and anxiety for subjects older than 18; and General Health Questionnaire (GHQ for children 5 to 18 years of age, which was completed by their mothers.More wives from the PTSD families had depression than wives from the controlled group (χ2=21,099; df=1; P<0,050. There was no difference between groups in frequency of depression and anxiety (χ2=0,003; df=1; P=0,959 for children older than 18 years. No difference in answers between groups of children younger than 18 years were found in the General Health Questionnaire. However, we found significant differences in separate questions. Mothers, who filled the questionnaire form, reported that children from fathers who had PTSD experienced stomach pain more often (χ2=10,474;df=2; P=0,005, eating problems (χ2=14,204;df=2; P=0,001 and breathing problems (χ2=9,748;df=2; P=0,008, than children from fathers who did not have PTSD. Children from fathers with PTSD were more easily upset (χ2

  11. The impact of leader-member exchange (LMX) on work-family interference and work-family facilitation

    NARCIS (Netherlands)

    L.G. Tummers (Lars); B.A.C. Bronkhorst (Babette)

    2014-01-01

    markdownabstract__Abstract__ Purpose – We analyze the effects of leadership on work-family spillovers. Specifically, we analyze the relationships between leadership (leader-member exchange, LMX) with one negative work-family spillover effect (work-family interference) and one positive work-family

  12. The impact of leader-member exchange (LMX) on work-family interference and work-family facilitation

    OpenAIRE

    Tummers, Lars; Bronkhorst, Babette

    2014-01-01

    markdownabstract__Abstract__ Purpose – We analyze the effects of leadership on work-family spillovers. Specifically, we analyze the relationships between leadership (leader-member exchange, LMX) with one negative work-family spillover effect (work-family interference) and one positive work-family spillover effect (work-family facilitation). We hypothesize that LMX influences work-family spillover via different mediators, rather than one all-encompassing mediator, such as empowerment. Design/m...

  13. Female children with incarcerated adult family members at risk for life-long neurological decline

    OpenAIRE

    Brewer-Smyth, Kathleen; Pohlig, Ryan T.; Bucurescu, Gabriel

    2016-01-01

    A secondary analysis of data from adult female prison inmates in the mid-Atlantic United States defined relationships between having incarcerated adult family members during childhood and neurological outcomes. Of 135 inmates, 99(73%) had one or more incarcerated adult family members during childhood. Regression analyses revealed that having incarcerated adult family members was related to greater frequency and severity of childhood abuse and higher incidence of neurological deficits in adult...

  14. Suicidal Ideation and Distress in Family Members Bereaved by Suicide in Portugal

    OpenAIRE

    Santos, Sara; Campos, Rui; Tavares, Sofia

    2015-01-01

    The present study assessed the impact of suicide and distress on suicidal ideation in a sample of 93 Portuguese family members bereaved by suicide. A control community sample of 102 adults also participated. After controlling for educational level, those bereaved by the suicide of a family member were found to have higher levels of suicidal ideation. Forty-two percent of family members had Suicide Ideation Questionnaire scores at or above the cutoff point. General distress, dep...

  15. Resilience in families in which a member has been diagnosed with schizophrenia.

    Science.gov (United States)

    Bishop, M; Greeff, A P

    2015-09-01

    Due to the extensive focus of the literature on the burden placed on families in which a member has been diagnosed with a mental illness such as schizophrenia, there is a need to identify factors that may help these families to be resilient and adapt to their crisis. The aim of this study was to identify family resilience qualities in families in which a member has been diagnosed with schizophrenia. The study comprised 42 families, represented by 33 parents and 9 siblings of the diagnosed family member. Families were recruited from three support groups within the Cape Metropolitan area, Western Cape, South Africa. Qualitative data were obtained through an open-ended question and quantitative data were collected with seven self-report questionnaires. The following family resilience qualities were identified: family income; finding support in their community; family togetherness; family communication style during crises; affirming and supportive communication patterns; family hardiness; commitment to the family; reframing crises as a challenge; and an internal locus of control within the family. The findings may be used by professionals and support group facilitators to enhance the resilience and functioning of families living with a member with schizophrenia. With approximately 1% of the world's population diagnosed with schizophrenia, it is clear that many families are affected when a member has been diagnosed. There is a need to identify factors that may help these families to be resilient. The aim of this study was to identify family resilience qualities in families in which a member has been diagnosed with schizophrenia. The following family resilience qualities were identified as resources that helped them to adapt to the many challenges put to them: family income, finding support in their community, the availability of hospitals, churches and professionals, family togetherness, family communication, family hardiness, commitment to the family, reframing crises

  16. 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 ...

  17. Survival in common cancers defined by risk and survival of family members

    Directory of Open Access Journals (Sweden)

    Jianguang Ji

    2011-10-01

    Full Text Available Studies on survival between familial and sporadic cancers have been inconclusive and only recent data on a limited number of cancers are available on the concordance of survival between family members. In this review, we address these questions by evaluating the published and unpublished data from the nation-wide Swedish Family-Cancer Database and a total of 13 cancer sites were assessed. Using sporadic cancer as reference, HRs were close to 1.0 for most of the familial cancers in both the offspring and parental generations, which suggested that survival in patients with familial and sporadic cancers was equal, with an exception for ovarian cancer with a worse prognosis. Compared to offspring whose parents had a poor survival, those with a good parental survival had a decreased risk of death for most cancers and HR was significantly decreased for cancers in the breast, prostate, bladder, and kidney. For colorectal and nervous system cancers, favorable survival between the generations showed a borderline significance. These data are consistent in showing that both good and poor survival in certain cancers aggregate in families. Genetic factors are likely to contribute to the results. These observations call for intensified efforts to consider heritability in survival as one mechanism regulating prognosis in cancer patients.

  18. Striving to be prepared for the painful: Management strategies following a family member's diagnosis of advanced cancer

    Directory of Open Access Journals (Sweden)

    Hedberg Berith

    2011-10-01

    Full Text Available Abstract Background Cancer has consequences not only for the sick person but also for those who have a close relationship with that person. Greater knowledge about how family members manage the situation in the period immediately following the diagnosis means greater opportunity to provide the best possible support for the family. The purpose of this study was to explore management strategies that family members use when the patient is in the early stage of treatment for advanced cancer. Methods Twenty family members of cancer patients were included in the study shortly after the diagnosis. The patients had been diagnosed 8-14 weeks earlier with advanced lung cancer or gastrointestinal cancer. The data were collected in interviews with family members and subjected to qualitative latent content analysis. Through the identification of similarities and dissimilarities in the units of meaning, abstraction into codes and sub-themes became possible. The sub-themes were then brought together in one overarching theme. Results The overall function of management strategies is expressed in the theme Striving to be prepared for the painful. The family members prepare themselves mentally for the anticipated tragedy. Family relationships become increasingly important, and family members want to spend all their time together. They try to banish thoughts of the impending death and want to live as normal a life as possible. It becomes important to family members to live in the present and save their energy for the time when they will need it the most. How participants handle their worries, anxiety and sadness can be categorized into seven sub-themes or management strategies: Making things easier in everyday life, Banishing thoughts about the approaching loss, Living in the present, Adjusting to the sick person's situation, Distracting oneself by being with others, Shielding the family from grief, and Attempting to maintain hope. Conclusions The findings revealed

  19. Helping concerned family members of individuals with substance use and concurrent disorders: An evaluation of a family member-oriented treatment program.

    Science.gov (United States)

    Denomme, William James; Benhanoh, Orry

    2017-08-01

    There is a growing body of research demonstrating that families of individuals with substance use and concurrent disorders (SUCD) experience a wide range of biopsychosocial problems that significantly impedes their quality of life and health. However, there has been a relative lack of treatment programs primarily focused on improving the well-being and quality of life of these family members. The current study assessed the efficacy of such a program at reducing stress, increasing perceived social support from family and friends, and increasing general, dyadic, and self-rated family functioning within these concerned family members. A sample of 125 family members of individuals with SUCDs was recruited, of which 97 participated in the treatment program and 28 were used as the comparison group. Results indicated that the treatment program significantly reduced stress, increased perceived social support from family and friends, and increased general, dyadic and self-rated family functioning. A perceived personal benefits questionnaire demonstrated that participants had a better understanding of SUCDs, better coping capabilities in regard to emotional difficulties, adopted stronger coping methods, participated in more leisure activities, and improved their relationship with the individual with a SUCD. The results of the current study further demonstrate the need to implement more of these family-member oriented psycho-educational treatment programs. Copyright © 2017 Elsevier Inc. All rights reserved.

  20. Few opportunities to influence decisions regarding the care and treatment of an older hospitalized family member: a qualitative study among family members.

    Science.gov (United States)

    Nyborg, Ingrid; Danbolt, Lars Johan; Kirkevold, Marit

    2017-08-31

    The drive towards patient involvement in health services has been increasingly promoted. The World Health Organisation emphasizes the family's perspective in comprehensive care. Internationally there is an increased emphasis on what patients and their family tell about the hospital experiences. However, current literature does not adequately address the question of participation experiences among relatives of older hospitalized family members. There is a paucity of research with a generational perspective on relatives' opportunities to exert influence. The aim of the study was to explore relatives' experiences of opportunities to participate in decisions about the care and treatment of older hospitalized family members and whether there are different experiences of influence to the relatives' age. This was an explorative study applying individual qualitative interviews. The interviews were analysed following hermeneutic methodological principles. Two Norwegian geriatric wards participated: one at a university hospital and one at a local hospital. Twelve participants, six women and six men, were purposively selected. The relatives were aged from 36 to 88 (mean age 62) and were spouses, children and/or children-in-law of patients. The relatives' experienced opportunities to exert influence were distributed along a continuum ranging from older relatives being reactive waiting for an initiative from health professionals, to younger adults being proactive securing influence. Older "invisible" carers appeared to go unnoticed by the health professionals, establishing few opportunities to influence decisions. The middle-aged relatives also experienced limited influence, but participated when the hospital needed it. However, limited participation seemed to have less impact on their lives than in the older relatives. Middle-aged relatives and younger adults identified strategies in which visibility was the key to increasing the odds of gaining participation. The exceptional

  1. 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.

  2. Stress and coping of Hong Kong Chinese family members during a critical illness.

    Science.gov (United States)

    Chui, Winter Y-Y; Chan, Sally W-C

    2007-02-01

    The present study aimed to investigate the stress and coping strategies of Hong Kong Chinese families during a critical illness and to examine the relationships between stress and coping. Admissions to intensive care unit are usually an unanticipated event, which imposes stress on the family. Family's wellness is one of the significant factors affecting patient's well-beings. Much work has been conducted in Western societies. Stress and coping in Chinese families of critically ill patients have rarely been discussed. Structured face-to-face interviews were conducted, using the Impact of Events Scale and the Family Crisis Oriented Personal Evaluation Scales. A convenience sample of 133 participants was recruited from a regional hospital in Hong Kong. Many were patients' children with age between 30 and 49. A total of 39.1% (n = 52) of the participants were males and 60.9% (n = 81) were females. The participants experienced high level of stress (mean = 25.1, SD = 8.3). Higher level of stress were experienced by female (t = -4.6; d.f. = 1, 131; P = 0.00), those with lower educational attainment (F = 3.0; d.f. = 2, 130; P = 0.05) and those whose relatives were admitted to the intensive care unit unexpectedly (t = -2.2; d.f. = 1; P = 0.03). Patients' length of stay in the unit was significantly correlated with levels of stress (r = 0.5, P stress had significant correlation with coping strategies utilization (r = 0.5, P stress-coping pattern 'fatalistic voluntarism'. This study contributes to the understanding of Hong Kong Chinese families' stress and coping during a critical illness. Comprehensive assessments of family members' psychosocial needs are important to plan appropriate interventions to alleviate their stress and strengthen their coping skills. The findings will serve as guidance for nurses in delivering culturally sensitive and competent interventions.

  3. Spouses/Family Members of Service Members at Risk for PTSD or Suicide

    Science.gov (United States)

    2016-09-01

    maintaining work / life balance . 4. Strong connection with extended family – both the partner’s (for support) and the soldier’s (for attempting to...the demands of the military, due to frequent moves. 2. Disruptions to family life , such as canceled vacations (due to changes in work demands...Some spouses noted that effective leaders could reduce the negative impact (e.g., by attempting to help soldiers achieve work / family balance with

  4. [Family members' experiences of caring for persons with dementia and outreach counseling--an interpretative phenomenological study].

    Science.gov (United States)

    Vögeli, Samuel; Frei, Irena Anna; Spichiger, Elisabeth

    2016-01-01

    Almost two-thirds of the 110,000 people living with dementia in Switzerland receive home care from family members. Outreach counselling can reduce the burden for family caregivers and delay nursing home placement. However, little is known of how this works and how caregivers experience the counselling. The Canton of Aargau Alzheimer's Association has been conducting a pilot project to demonstrate the necessity, effectiveness and practicability of outreach counselling in (their canton). As a part of the evaluation of the project this study explored how family members experience the process of caring for a relative with dementia and outreach counselling. Interpretive phenomenology–a qualitative approach–was used to analyse data from interviews with twelve family caregivers. Most family members felt supported in caregiving by outreach counselling. Three aspects of the counselling were especially important to the participants: being understood and taken seriously by the counsellor; receiving answers to their most pressing questions concerning the illness and being supported when difficult decision had to be taken; regaining personal time and learning how to better interact with the person with dementia. Two participants would have wished for more help by the counsellor. To meet the needs of the family members, consultants should have sufficient experience in dementia patient care and should be strongly networked across the local health and welfare system. This study shows that family members can experience outreach counselling as a great support in their caregiving roles.

  5. Metabolic Syndrome in Korean Cancer Survivors and Family Members: A Study in a Health Promotion Center.

    Science.gov (United States)

    Shin, Jin Young; Choi, Yoon Ho; Song, Yun Mi

    2015-01-01

    This cross-sectional study evaluated the risk of metabolic syndrome (MetS) in cancer survivors and family members. Subjects were 48,934 adults (24,786 men, 24,148 women) aged ≥40yr who receive a routine health examination at 1 hospital from January 2010 to December 2012. There were 2468 cancer survivors, 18,211 with cancer patients in the family, and 28,255 noncancer subjects, who never experienced cancer and whose family members either. Associations between MetS and cancer experience were assessed using multiple logistic regression analysis. The odds ratio (OR) of MetS in female cancer survivors was significantly higher than noncancer subjects after adjusting for age, smoking, physical activity, and alcohol intake (OR = 1.22, 95% confidence intervals: 1.02-1.47]. However, the OR of MetS for male survivors did not differ from that of noncancer subjects. Gastric cancer survivors had a lower OR of MetS than noncancer subjects (0.37, 0.27-0.50). ORs of breast cancer (1.49, 1.00-2.23) and prostate cancer survivors (1.46, 1.07-1.99) were higher than the OR of MetS for noncancer subjects. There was no difference in the OR of MetS between the family members of cancer patients and non-cancer subjects. These findings suggest that the odds of MetS for cancer survivors may differ by cancer type and by sex.

  6. [Is it beneficial to involve family member? A literature review to psychosocial interventions in family-centered nursing].

    Science.gov (United States)

    Mahrer-Imhof, Romy; Bruylands, Michelle

    2014-10-01

    Families influence the wellbeing of patients and are influenced by illness themselves. Involving caregivers in patient care was examined in multiple studies. The aim of this literature review was to investigate the different approaches to family-centered interventions (FI) and to evaluate the tested outcomes as well as the detected effect sizes. This search for a systematic literature review of randomized controlled trials and metaanalyses revealed three Meta Analyses with studies until 2007 and six randomized controlled studies from 2007 to 2012. FI showed small to middle positive effects on the outcomes depression, mental health, anxiety of patients and family members and on caregiver burden. A conclusive effect on physical health could not be shown. The results strongly depend on the enrolled patient population, the targeted participants of FI, as well as the focus, type and dose of FI. The studies showed vast differences in the length and type of intervention, the target population and the selection of outcomes. Comparing outcomes was difficult due to the use of different outcome measures. Further research with various populations, different FI intensity but with same, valid outcome measures is needed.

  7. FGFR Family Members Protein Expression as Prognostic Markers in Oral Cavity and Oropharyngeal Squamous Cell Carcinoma

    NARCIS (Netherlands)

    Koole, Koos; Clausen, Martijn J. A. M.; van Es, Robert J. J.; van Kempen, Pauline M. W.; Melchers, Lieuwe J.; Koole, Ron; Langendijk, Johannes A.; van Diest, Paul J.; Roodenburg, Jan L. N.; Schuuring, Ed; Willems, Stefan M.

    Introduction Fibroblast growth factor receptor family member proteins (FGFR1-4) have been identified as promising novel therapeutic targets and prognostic markers in a wide spectrum of solid tumors. The present study investigates the expression and prognostic value of four FGFR family member

  8. Caregiving for Dementia in Family Members: Caregiving Burden and Prospects for Effective Intervention.

    Science.gov (United States)

    Maiden, Robert J.; And Others

    Caring for a family member with dementia is a major source of stress for the caregiver. To assess the impact of caring for an impaired family member and to evaluate the effectiveness of intervention programs, 34 caregivers of relatives with dementia completed an amended form of the Philadelphia Geriatric Center's Caregiver Survey and two…

  9. The impact of leader-member exchange (LMX) on work-family interference and work-family facilitation

    NARCIS (Netherlands)

    L.G. Tummers (Lars); B.A.C. Bronkhorst (Babette)

    2014-01-01

    markdownabstract__Abstract__ __Purpose__ – We analyze the effects of leadership on work-family spillovers. Specifically, we analyze the relationships between leadership (leader-member exchange, LMX) with one negative work-family spillover effect (work-family interference) and one positive

  10. Resilient family processes, personal reintegration, and subjective well-being outcomes for military personnel and their family members.

    Science.gov (United States)

    Clark, Malissa A; O'Neal, Catherine W; Conley, Kate M; Mancini, Jay A

    2018-01-01

    Deployment affects not just the service members, but also their family members back home. Accordingly, this study examined how resilient family processes during a deployment (i.e., frequency of communication and household management) were related to the personal reintegration of each family member (i.e., how well each family member begins to "feel like oneself again" after a deployment), as well as several indicators of subjective well-being. Drawing from the family attachment network model (Riggs & Riggs, 2011), the present study collected survey data from 273 service members, their partners, and their adolescent children. Resilient family processes during the deployment itself (i.e., frequency of communication, household management), postdeployment positive and negative personal reintegration, and several indicators of well-being were assessed. Frequency of communication was related to personal reintegration for service members, while household management was related to personal reintegration for nondeployed partners; both factors were related to personal reintegration for adolescents. Negative and positive personal reintegration related to a variety of subjective well-being outcomes for each individual family member. Interindividual (i.e., crossover) effects were also found, particularly between adolescents and nondeployed partners. (PsycINFO Database Record (c) 2018 APA, all rights reserved).

  11. Caring for a family member with intellectual disability and epilepsy: practical, social and emotional perspectives.

    Science.gov (United States)

    Thompson, Rose; Kerr, Mike; Glynn, Mike; Linehan, Christine

    2014-11-01

    To examine the caregiving impact of those who support a family member with intellectual disability and epilepsy. An online, qualitative international survey was conducted via the auspices of the International Bureau of Epilepsy with various stakeholders who support individuals who have intellectual disability and epilepsy. Qualitative comments were analyzed from respondents who identified themselves as family members (n=48; 36%) who referred specifically to the impact of supporting a family member with these combined disabilities. Four main domains, which were comprised of ten themes, were derived from the qualitative data using Braun and Clarke's qualitative framework. These domains comprised (1) practical concerns, (2) disrupted family dynamics, (3) emotional burden and (4) positive experiences. In combination these themes illustrate the pervasive impact on family life for those supporting an individual with complex needs. Financial concerns, coordination and responsibility of care, diverted attention from other family members and social isolation all contributed a significant burden of care for family members. Positive aspects were, however, also cited including the closeness of the family unit and a fostering of altruistic behavior. The study provides an insight into an under-researched area. The burden of caring for a family member across the lifespan has a largely negative and pervasive impact. Targeted service provision could contribute to an amelioration of the challenges faced by these families. Copyright © 2014 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved.

  12. Involvement of family members in life with type 2 diabetes

    DEFF Research Database (Denmark)

    Grabowski, Dan; Andersen, Tue Helms; Varming, Annemarie

    2017-01-01

    OBJECTIVES: Family involvement plays a key role in diabetes management. Problems and challenges related to type 2-diabetes often affect the whole family, and relatives are at increased risk of developing diabetes themselves. We highlight these issues in our objectives: (1) to uncover specific...... family problems associated with mutual involvement in life with type 2-diabetes and (2) to analytically look at ways of approaching these problems in healthcare settings. METHODS: Qualitative data were gathered in participatory problem assessment workshops. The data were analysed in three rounds using...... radical hermeneutics. RESULTS: Problems were categorized in six domains: knowledge, communication, support, everyday life, roles and worries. The final cross-analysis focusing on the link between family identity and healthcare authenticity provided information on how the six domains can be approached...

  13. Recovering from Opioid Overdose: Resources for Overdose Survivors & Family Members

    Science.gov (United States)

    ... and gratitude, all accompanied by the discomfort of opioid withdrawal. Most need the support of family and friends to take the next steps toward recovery. While many factors can contribute to opioid overdose, it is al most always an accident. ...

  14. The experiences of family members in the nursing home to hospital transfer decision

    Directory of Open Access Journals (Sweden)

    Kathleen Abrahamson

    2016-11-01

    Full Text Available Abstract Background The objective of this study was to better understand the experiences of family members in the nursing home to hospital transfer decision making process. Semi-structured interviews were conducted with 20 family members who had recently been involved in a nursing home to hospital transfer decision. Results Family members perceived themselves to play an advocacy role in their resident’s care and interview themes clustered within three over-arching categories: Family perception of the nursing home’s capacity to provide medical care: Resident and family choices; and issues at ‘hand-off’ and the hospital. Multiple sub-themes were also identified. Conclusions Findings from this study contribute to knowledge surrounding the nursing home transfer decision by illuminating the experiences of family members in the transfer decision process.

  15. Knowledge of Dementia: Do family members understand dementia as a terminal condition?

    Science.gov (United States)

    Andrews, Sharon; McInerney, Fran; Toye, Christine; Parkinson, Camillus-Anthony; Robinson, Andrew

    2017-07-01

    Current research identifies advanced dementia to be the terminal phase of this progressive and incurable condition. However, there has been relatively little investigation into how family members of people with advanced dementia understand their relative's condition. In this article, we report on semi-structured interviews with 10 family members of people with advanced dementia, in a residential aged care facility. Using a qualitative, descriptive design, we explored family members' understandings of dementia, whether they were aware that it was a terminal condition, and the ways they developed their understandings. Findings revealed that the majority of family members could not recognize the terminal nature of dementia. Relying on predominantly lay understandings, they had little access to formal information and most failed to conceptualize a connection between dementia and death. Moreover, family members engaged in limited dialogue with aged care staff about such issues, despite their relatives being in an advanced stage of the disease. Findings from our study suggest that how family members understand their relative's condition requires greater attention. The development of staff/family partnerships that promote shared communication about dementia and dying may enhance family members' understandings of the dementia trajectory and the types of decisions they may be faced with during the more advanced stages of the disease.

  16. Lesch-Nyhan variant syndrome: variable presentation in 3 affected family members.

    Science.gov (United States)

    Sarafoglou, Kyriakie; Grosse-Redlinger, Krista; Boys, Christopher J; Charnas, Laurence; Otten, Noelle; Broock, Robyn; Nyhan, William L

    2010-06-01

    Lesch-Nyhan disease is an inborn error of purine metabolism that results from deficiency of the activity of hypoxanthine phosphoribosyltransferase (HPRT). The heterogeneity of clinical phenotypes seen in HPRT deficiency corresponds to an inverse relationship between HPRT enzyme activity and clinical severity. With rare exception, each mutation produces a stereotypical pattern of clinical disease; onset of neurologic symptoms occurs during infancy and is thought to be nonprogressive. To document a family in which a single HPRT gene mutation has led to 3 different clinical and enzymatic phenotypes. Case report. Settings A university-based outpatient metabolic clinic and a biochemical genetics laboratory. Patients Three males (2 infants and their grandfather) from the same family with Lesch-Nyhan variant, including one of the oldest patients with Lesch-Nyhan variant at diagnosis (65 years). Clinical and biochemical observations. Sequencing of 5 family members revealed a novel mutation c.550G>T in exon 7 of the HPRT gene. The considerably variable clinical phenotype corresponded with the variable enzymatic activity in the 3 males, with the grandfather being the most severely affected. The different phenotypes encountered in the enzymatic analysis of cultured fibroblasts from a single mutation in the same family is unprecedented. The significant decrease in the grandfather's HPRT enzymatic activity compared with that of his grandchildren could be a function of the Hayflick Limit Theory of cell senescence.

  17. Support needs and experiences of family members of wounded, injured or sick UK service personnel.

    Science.gov (United States)

    Verey, Anna; Keeling, M; Thandi, G; Stevelink, S; Fear, N

    2017-12-01

    When a service person has been wounded, injured or sick (WIS), family members may provide care during their recovery in an unpaid capacity. This may occur in diverse environments including hospitals, inpatient rehabilitation centres, in the community and at home. Thirty-seven family members of WIS personnel were interviewed regarding their support needs, family relationships and use of UK support services. Semistructured, in-depth telephone interviews were used, with data analysis undertaken using a thematic approach. 'Family member involvement' was the main theme under which four subthemes were situated: 'continuity of support', 'proactive signposting and initiating contact', 'psychoeducation and counselling' and 'higher risk groups'. Family members felt they might benefit from direct, consistent and continuous care regardless of the WIS person's injury or engagement type, and whether the WIS person was being treated in a hospital, rehabilitative centre or at home. The findings of this study suggest that family members of WIS personnel value proactive, direct and sustained communication from support service providers. We suggest that families of UK service personnel may benefit from family care coordinators, who could provide continuous and consistent care to family members of WIS personnel. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

  18. Being a close family member of a person with dementia living in a nursing home.

    Science.gov (United States)

    Seiger Cronfalk, Berit; Ternestedt, Britt-Marie; Norberg, Astrid

    2017-11-01

    To illuminate how family members of persons with dementia describe their own experiences, before and after placing their relative in a nursing home. In the Western world and with a growing population of older people, the number of persons with dementia increases. Family members often become carers in their own homes creating stressful and exhausting situation that eventually leads to relocating the person to a nursing home. This may lead to troubled conscience among family members. This is a qualitative study with descriptive design based on interviews with ten family members to residents with dementia at one small nursing home ward. Data were analysed using content analysis. Five categories were derived from data: relocating a person with dementia - a responsibility; visiting the resident - a relief or a burden; the participants taking part in and monitoring the residents' care needs; participants meeting their own needs; and thoughts about the future and resident's death. The result shows both positive and negative aspects of being a family member to persons with dementia. Family members described feeling relief as well as having a troubled conscience when placing a relative in a nursing home. They held themselves responsible for monitoring and evaluating the quality of the care. Family members expressed fearing a slow death for the person with dementia as well as for their own sake. Most felt well treated by the staff. Family members were responsible for relocating the residents to the nursing home. This in itself was found to cause feelings of moral concerns and generating troubled conscience. Staff at nursing homes needs to exercise family-centred care to benefit the persons with dementia, their family members and the staff themselves. © 2017 John Wiley & Sons Ltd.

  19. 76 FR 67363 - Extending Religious and Family Member FICA and FUTA Exceptions to Disregarded Entities

    Science.gov (United States)

    2011-11-01

    ... unless the requisite family relationship exists between the employee and each of the partners comprising... the exceptions from employment that apply because of the existence of a family relationship between...(c). The inability of these entities to benefit from the exceptions for family employees and members...

  20. Perceptions of Individual and Family Functioning Among Deployed Female National Guard Members.

    Science.gov (United States)

    Kelly, Patricia J; Cheng, An-Lin; Berkel, LaVerne A; Nilsson, Johanna

    2016-08-01

    Females currently make up 15% of U.S. military service members. Minimal attention has been paid to families of female National Guard members who have been deployed and their subsequent reintegration challenges. This cross-sectional Internet-based survey of female members of four National Guard units compared those who were and were not deployed. Instruments, guided by the variables of the Family Resilience Model, measured individual, family, and deployment-related factors. Bivariate analysis and ordinal logistic regression were done to assess differences between the groups. Of the 239 National Guard members surveyed, deployed women (n = 164) had significantly higher levels of posttraumatic stress disorder (PTSD; p family functioning were higher among deployed when compared with never deployed women. Results indicate community interventions that focus on strengthening coping skills of female Guard members would be useful for this population. © The Author(s) 2016.

  1. "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.

  2. Children in families with a severely mentally ill member. Prevalence and needs for support.

    Science.gov (United States)

    Ostman, Margareta; Hansson, Lars

    2002-05-01

    The prevalence of minor children in families with a severely mentally ill member, these children's needs for support and the situation of the spouses were investigated as part of a multi-centre study of the quality of the mental health services in Sweden performed in 1986, 1991 and 1997. The sample was drawn from relatives of compulsorily and voluntarily admitted inpatients to acute psychiatric wards. The instrument used was a semi-structured questionnaire, interviewing relatives about the burden of relatives, their needs for support and participation in care and items concerning the situation of the under-aged children in these families. The results over the years investigated showed the same proportion of patients admitted to hospital who were also parents to minor children and a decreasing proportion of patients who had the custody of their children. Female patients were more often a parent and also more often had the custody of the children. The majority of the children had needs for support caused by their parent's illness and these needs were met in half of the cases. The healthy spouses in families with minor children more often had to give up their own occupation and to a higher extent experienced own needs for care and support from psychiatric services compared to spouses without minor children. The study supports that there is an urgent need for the psychiatric services to initiate parental issues in programmes for treatment and rehabilitation to ensure that the specific needs of minor children are met.

  3. Family Benefits In Member States Of The European Union: A Comparative Perspective

    Directory of Open Access Journals (Sweden)

    Stănescu Simona Maria

    2015-06-01

    Full Text Available The article intends to be a screening of family benefits in the 28 Member States of the European Union (EU and to contribute to the research of shared trends with respect to family approach in these countries. Four types of family benefits including eight distinctive categories are analysed: child-benefit, child care allowances, child-raising allowances, and other benefits (birth and adoption grants, allowance for single parents, special allowances for children with disabilities, advance payments for maintenance and other allowances. The paper is based on primary and secondary analysis of 28 sets of national data provided through the European Union's Mutual Information System on Social Protection (MISSOC. Three categories of member states are considered: founder member states of the EU, other “old” member states, and the new Central and Eastern ones. Chronological development of national regulations with impact on family benefits is analysed in connection with the moment of becoming a member state. Various forms of family benefits legislation and their main subjects of interest are further researched. The last part of the article looks at the coverage of family benefits. Seven member states operate in this respect based on regulations adopted before EU accession. Belgium, Finland, and Lithuania have the “most preserved” family regulations per category of member states. The first three topics of family regulations are: child, family, and allowance / benefit. The most frequently provided family benefits are: birth and adoption grants, and special allowance for children with disabilities. All eight family benefits are provided in France, Finland, Hungary, and Slovenia. Only two types of family benefits are available in Ireland, Spain, and Cyprus.

  4. Forgotten family members: the importance of siblings in early psychosis.

    Science.gov (United States)

    Bowman, Siann; Alvarez-Jimenez, Mario; Wade, Darryl; McGorry, Patrick; Howie, Linsey

    2014-08-01

    This paper reviews the evidence on the significance of sibling inclusion in family interventions and support during early psychosis. This narrative review presents the current research related to the importance of family work during early psychosis, the needs and developmental significance of siblings during adolescence and early adulthood, the protective effects of sibling relationships, and the characteristics of early psychosis relevant to the sibling experience. It will also review the evidence of the sibling experience in chronic physical illness and disability, as well as long-term psychotic illness. Despite the evidence that working with families is important during early psychosis, siblings have been largely ignored. Siblings are an important reciprocal relationship of long duration. They play an important role in development during adolescence and early adulthood. These relationships may be an underutilized protective factor due to their inherent benefits and social support. Developmental theories imply that early psychosis could negatively impact the sibling relationship and their quality of life, effecting personality development and health outcomes. The evidence shows that adolescent physical illness or disability has a significantly negative impact on the sibling's quality of life and increases the risk for the onset of mental health issues. Long-term psychotic illness also results in negative experiences for siblings. Current evidence shows that siblings in early psychosis experience psychological distress and changes in functional performance. Further research using standard measures is required to understand the impact early psychosis has on the sibling relationship and their quality of life. © 2013 Wiley Publishing Asia Pty Ltd.

  5. Stigma by association and family burden among family members of people with mental illness: the mediating role of coping.

    Science.gov (United States)

    van der Sanden, Remko L M; Pryor, John B; Stutterheim, Sarah E; Kok, Gerjo; Bos, Arjan E R

    2016-09-01

    When someone has a mental illness, family members may share the experience of stigma. Past research has established that family members' experiences of stigma by association predict psychological distress and lower quality-of-life. The present study, conducted with 503 family members of people with mental illness examined the prevalence of 14 different coping strategies. Of greater importance, we examined the role of these coping strategies as mediators of the relationships between stigma by association and family burden, on the one hand, and outcomes, such as psychological distress and quality-of-life, on the other. The results showed that both perceived stigma by association and family burden are associated with greater psychological distress and lower quality-of-life, and that most coping strategies mediate these relationships. Adaptive coping strategies were related to reduced negative outcomes, while most maladaptive coping strategies were related to enhanced negative outcomes. Implications for intervention development are discussed.

  6. Family members' experience of the pre-diagnostic phase of dementia: a synthesis of qualitative evidence.

    Science.gov (United States)

    Rogers, Kirrily; Coleman, Honor; Brodtmann, Amy; Darby, David; Anderson, Vicki

    2017-09-01

    Most research on family members' experience of dementia has focused on the time after diagnosis. Yet, once people reach clinical attention, families have already been living with the changes for some time. These pre-diagnosis experiences can influence later caregiving. We aimed to synthesize qualitative research exploring family members' experiences of the pre-diagnostic phase of dementia to inform clinical practice. We conducted a thematic synthesis of 11 studies that met our inclusion criteria following a comprehensive literature search. An overarching theme, sense-making, captured the primary process that family members engage in throughout the pre-diagnostic period. Within this, four major analytic themes were extracted as central concepts in understanding family members' experiences of the pre-diagnostic phase of dementia: the nature of change; appraisals of change; reactions to change; and the influence of others. Relevant features of the family experience of dementia onset can be characterized within several major themes. These findings highlight the complex process of recognizing early symptoms of dementia for people living with this condition and their families. Our findings also provide the foundation for developing theoretical frameworks that will ultimately assist with improving recognition of dementia onset, clinical communication with family members, and interventions to reduce family burden.

  7. Polymorphic light eruption and IL-1 family members: any difference with allergic contact dermatitis?

    Science.gov (United States)

    Lembo, S; Caiazzo, G; Balato, N; Monfrecola, G; Patra, V; Wolf, P; Balato, A

    2017-09-13

    Polymorphic light eruption (PLE) is described as a delayed-type hypersensitivity reaction (DTHR) toward a de novo light-induced antigen, yet to be identified. In effect, the inflammatory pathways of PLE and allergic contact dermatitis (ACD) share common patterns in terms of the mediators involved from the innate and adaptive immune system participating in the DTHR. As we have previously highlighted the role of interleukin (IL)-1 family members in ACD, we hypothesised that the same mediators could have similar functions in PLE. Our research aimed to assess the expression of certain IL-1family members in PLE patients vs. controls, and to compare it with ACD. The study population comprised 17 patients with PLE, 5 affected by ACD and 10 healthy controls in the same age range. Lesional and healthy skin samples were collected respectively from patients and donors. IL-36α, IL-36β, IL-36γ, IL-36 receptor antagonist (Ra), IL-1β, IL-33 gene and protein expressions were evaluated through RT-PCR and immunohistochemistry. Circulating proteins in the PLE patients were analysed by using western blot. The IL-36γ gene expression was significantly increased in PLE lesions compared to that in healthy controls and ACD lesions (***p PLE lesions compared to those of the healthy samples (***p PLE patients vs. controls (*p PLE with distinct differences from those in ACD, in particular with regard to IL-36γ mRNA regulation. Their role as activators of the local, and perhaps systemic, immune response, or as inhibitors of the immune tolerance machinery, needs further investigation.

  8. Family members' expectations regarding nurses' competence in care homes: a qualitative interview study.

    Science.gov (United States)

    Kiljunen, Outi; Kankkunen, Päivi; Partanen, Pirjo; Välimäki, Tarja

    2017-11-22

    Structural and cultural changes in the care of older people have influenced nursing practice, creating a need to identify current competency requirements for nurses working in care homes. Family members have an important role in ensuring the well-being of older people living in care homes, and family members' can provide valuable information about competence requirements. To explore the expectations of the care home residents' family members regarding the competence of nurses in care homes for older people. A qualitative descriptive design was used. Semi-structured interviews were conducted with 18 care home residents' family members between March and September 2016. Participants were recruited with help from regional associations and member associations of The Central Association of Carers in Finland and from regional associations of The Alzheimer's Society of Finland. The snowball technique was also used. The data were analysed using inductive content analysis. Ethics committee approval was obtained from the university committee on research ethics, and written informed consent was obtained from participants. The care home residents' family members expected that nurses would be able to interact with and treat people respectfully. Reflective collaboration between the nurse and a family member was also emphasised. Family members expected nurses to provide high-quality basic care and nursing and support residents' well-being individually and holistically. Family members' expectations reflect the need for ethical and interactional competence in the care home. In addition, evidence-based practice competencies are required to provide high-quality care. Nurses' ability to provide person-centred, individual and holistic care is vital to ensure care home residents' well-being. © 2017 Nordic College of Caring Science.

  9. Facebook as a tool for communication, collaboration, and informal knowledge exchange among members of a multisite family health team.

    Science.gov (United States)

    Lofters, Aisha K; Slater, Morgan B; Nicholas Angl, Emily; Leung, Fok-Han

    2016-01-01

    To implement and evaluate a private Facebook group for members of a large Ontario multisite Family Health Team (FHT) to facilitate improved communication and collaboration. Program implementation and subsequent survey of team members. A large multisite FHT in Toronto, Ontario. Health professionals of the FHT. Usage patterns and self-reported perceptions of the Facebook group by team members. At the time of the evaluation survey, the Facebook group had 43 members (37.4% of all FHT members). Activity in the group was never high, and posts by team members who were not among the researchers were infrequent throughout the study period. The content of posts fell into two broad categories: 1) information that might be useful to various team members and 2) questions posed by team members that others might be able to answer. Of the 26 team members (22.6%) who completed the evaluation survey, many reported that they never logged into the Facebook page (16 respondents), and never used it to communicate with team members outside of their own site of practice (19 respondents). Only six respondents reported no concerns with using Facebook as a professional communication tool; the most frequent concerns were regarding personal and patient privacy. The use of social media by health care practitioners is becoming ubiquitous. However, the issues of privacy concerns and determining how to use social media without adding to provider workload must be addressed to make it a useful tool in health care.

  10. Perceived Intrafamilial Connectedness and Autonomy in Families with and without an Anxious Family Member: A Multiple Informant Approach

    Science.gov (United States)

    de Albuquerque, Jiske E. G.; Schneider, Silvia

    2012-01-01

    Perceived intrafamilial "emotional connectedness" and "autonomy" were investigated within families with and without an anxious family member using a multiple informant approach. The sample consisted of 32 mothers with a current anxiety disorder and 56 controls, their partners, and their anxious and nonanxious teenage children. No differences were…

  11. 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.

  12. 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.

  13. Experience of family members as a result of children's hospitalization at the Intensive Care Unit

    Directory of Open Access Journals (Sweden)

    Maria Virginia Martins Faria Faddul Alves

    2013-07-01

    Full Text Available Objective. To describe the experience of family members as a result of children's hospitalization at the Intensive Care Unit (ICU. Methodology. Descriptive and cross-sectional study. A structured interview was held with 20 relatives of patients hospitalized at two clinics of the Botucatu Medical School at Universidade Estadual Paulista 'Júlio de Mesquita Filho'. Information was collected between July and September 2010. Results. The main characteristics of the participating relatives were: 80% mothers of the children; 70% low education level and 70% married. Sixty percent of the children were hospitalized at the ICU for the first time. Eighty percent of the interviewees believe that the children's behavior changes inside the unit and 85% consider that visiting hours are sufficient. The predominant negative feelings are fear (50% and insecurity (20%, while the predominant positive feelings are hope (50% and the expectation of discharge (25%. The professional who most supported the relatives was the nurse (35%. Conclusion. The family members' experience as a result of the children's hospitalization at the ICU involves positive and negative aspects, which also affect the child's behavior at the unit.

  14. 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

  15. The Importance of Situational Awareness: A Qualitative Study of Family Members' and Nurses' Perspectives on Teaching During Family-Centered Rounds.

    Science.gov (United States)

    Beck, Jimmy; Meyer, Rebecca; Kind, Terry; Bhansali, Priti

    2015-10-01

    Family-centered rounds (FCR) has become a leading model for pediatric inpatient rounding. During FCR, faculty must balance trainees' educational needs with patient care priorities. Investigators have examined trainees' views on effective teaching during FCR, but none have evaluated what family members and nurses consider to be effective teaching behaviors of attending physicians. The authors sought to explore family members' and nurses' perspectives on effective teaching behaviors during FCR. The authors conducted (2012-2013) a qualitative study of families and nurses at an academic children's hospital where FCR is the standard model for inpatient rounds. Nurses and families familiar with FCR participated in separate focus groups. The authors reviewed focus group transcripts using techniques of qualitative content analysis; they generated codes and developed categories, supported by illustrative quotations. Fifteen nurses and 13 family members participated in the focus groups. The unifying theme was that situational awareness on behalf of the attending physician is essential for FCR to be educational for all participants. The authors identified four categories of awareness-(1) cognitive factors, (2) logistics and time management, (3) physical environment, (4) emotional state-and developed a set of effective teaching strategies based on participants' comments. The findings of this study support previous work identifying effective FCR teaching strategies, but this study is the first to include the perspectives of families and nurses. The inclusion of these participants provides a framework for faculty development and training to improve the educational value of FCR.

  16. A survey of family members' satisfaction with the services provided by hospice palliative care volunteers.

    Science.gov (United States)

    Claxton-Oldfield, Stephen; Gosselin, Natasha; Schmidt-Chamberlain, Kirsten; Claxton-Oldfield, Jane

    2010-05-01

    A total of 22 family members, whose deceased loved ones had used the services of a hospice palliative care volunteer, responded to a brief survey designed to assess the importance of the different kinds of support offered to them (family members) by the volunteer, their impressions of the volunteers' personal qualities/characteristics, their general experiences with the volunteer, and their overall satisfaction with the volunteer services. The kind of support that received the highest importance rating from family members was the opportunity to take a much-needed break from the demands of caring for their loved one, closely followed by emotional support, the volunteer spending time with them, and the volunteer providing them with information. Family members rated volunteers highly on a list of qualities/characteristics that exemplify individuals who are effective in this role. In all, 85% of the family members felt that their volunteer was well trained and 95% did not feel that their or their loved one's privacy had been invaded by having a volunteer. Overall, family members were very satisfied with the volunteer support they received. Some limitations of the study are discussed.

  17. CHIS - Information concerning the health insurance of frontalier workers who are family members of a CHIS main member

    CERN Multimedia

    2014-01-01

    We recently informed you that the Organization was still in discussions with the Host State authorities to clarify the situation regarding the health insurance of frontalier workers who are family members (as defined in the Staff Rules and Regulations) of a CHIS main member, and that we were hoping to arrive at a solution soon.   After extensive exchanges, we finally obtained a response a few days ago from the Swiss authorities, with which we are fully satisfied and which we can summarise as follows: 1) Frontalier workers who are currently using the CHIS as their basic health insurance can continue to do so. 2) Family members who become frontalier workers, or those who have not yet exercised their “right to choose” (droit d’option) can opt to use the CHIS as their basic health insurance. To this end, they must complete the form regarding the health insurance of frontaliers, ticking the LAMal box and submitting their certificate of CHIS membership (available from U...

  18. Home support workers perceptions of family members of their older clients: a qualitative study.

    Science.gov (United States)

    Sims-Gould, Joanie; Byrne, Kerry; Tong, Catherine; Martin-Matthews, Anne

    2015-12-12

    Health care discourse is replete with references to building partnerships between formal and informal care systems of support, particularly in community and home based health care. Little work has been done to examine the relationship between home health care workers and family caregivers of older clients. The purpose of this study is to examine home support workers' (HSWs) perceptions of their interactions with their clients' family members. The goal of this research is to improve client care and better connect formal and informal care systems. A qualitative study, using in-depth interviews was conducted with 118 home support workers in British Columbia, Canada. Framework analysis was used and a number of strategies were employed to ensure rigor including: memo writing and analysis meetings. Interviews were transcribed verbatim and sent to a professional transcription agency. Nvivo 10 software was used to manage the data. Interactions between HSWs and family members are characterized in terms both of complementary labour (family members providing informational and instrumental support to HSWs), and disrupted labour (family members creating emotion work and additional instrumental work for HSWs). Two factors, the care plan and empathic awareness, further impact the relationship between HSWs and family caregivers. HSWs and family members work to support one another instrumentally and emotionally through interdependent interactions and empathic awareness. Organizational Care Plans that are too rigid or limited in their scope are key factors constraining interactions.

  19. Adaptive coping strategies of affected family members of a relative with substance misuse: A qualitative study.

    Science.gov (United States)

    McCann, Terence V; Lubman, Dan I

    2018-01-01

    To explore the coping strategies used by affected family members of a relative with substance misuse. Families play an important role in supporting a relative with substance misuse. However, the experience often has an adverse effect on their general well-being, the extent of which depends largely on their coping strategies. An interpretative phenomenological analysis study. Data were collected between January - December 2015. Semistructured, audio-recorded qualitative interviews were conducted with 31 affected family members. Three main themes and related subthemes were abstracted from the data illustrating how participants coped with their relative's substance misuse: (1) Seeking timely access to evidence-based information; (2) Enhancing personal coping strategies and (3) Accessing informal and formal support. Greater investment is needed in support services for affected family members, particularly in regional and rural areas. A wide range of accessible evidence-based information and informal and formal support, including telephone and online support, is needed to assist them to cope in this crucial support-giving role. Affected family members need to adopt a flexible set of coping strategies while supporting a relative with substance misuse. Family and friends, alcohol and other drug services, mental health nurses and other clinicians have a critical role providing emotional, instrumental and educational support to affected family members to enhance their adaptive coping strategies. © 2017 John Wiley & Sons Ltd.

  20. Family members' involvement in psychiatric care: experiences of the healthcare professionals' approach and feeling of alienation.

    Science.gov (United States)

    Ewertzon, M; Lützén, K; Svensson, E; Andershed, B

    2010-06-01

    The involvement of family members in psychiatric care is important for the recovery of persons with psychotic disorders and subsequently reduces the burden on the family. Earlier qualitative studies suggest that the participation of family members can be limited by how they experience the professionals' approach, which suggests a connection to the concept of alienation. Thus, the aim of this study was in a national sample investigate family members' experiences of the psychiatric health care professionals' approach. Data were collected by the Family Involvement and Alienation Questionnaire. The median level and quartiles were used to describe the distributions and data were analysed with non-parametric statistical methods. Seventy family members of persons receiving psychiatric care participated in the study. The results indicate that a majority of the participants respond that they have experiencing a negative approach from the professionals, indicating lack of confirmation and cooperation. The results also indicate that a majority of the participants felt powerlessness and social isolation in the care being provided, indicating feelings of alienation. A significant but weak association was found between the family members' experiences of the professionals' approach and their feelings of alienation.

  1. Caring for a family member with a traumatic brain injury.

    Science.gov (United States)

    Knight, R G; Devereux, R; Godfrey, H P

    1998-06-01

    The responses to a questionnaire on subjective burden are reported for 52 primary caregivers of a group of persons with traumatic brain injuries sustained an average of 6 years previously. The aim of the study was to examine satisfaction with social support, perception of coping skills, and appraisal of symptoms as predictors of strain in the carers. A range of responses, both positive and negative, to the work of caring for a relative with a head injury was reported. A high prevalence rate of emotional and behavioural changes in the persons with head injuries was found and the amount of distress caused by these symptoms was found to be predictive of burden. The other factor important in predicting burden was the carers' ratings of their satisfaction with their ability to cope with the work of caregiving. Social support, injury severity, and the demographic characteristics of the persons with head injury and their carers were not significant predictors. Depression in the carers was also investigated and the variable most predictive of elevated depression scores was coping satisfaction. These findings reinforce the importance of strengthening carers coping resources in rehabilitation work with head injured persons and their families.

  2. Leiomodins: larger members of the tropomodulin (Tmod) gene family

    Science.gov (United States)

    Conley, C. A.; Fritz-Six, K. L.; Almenar-Queralt, A.; Fowler, V. M.

    2001-01-01

    The 64-kDa autoantigen D1 or 1D, first identified as a potential autoantigen in Graves' disease, is similar to the tropomodulin (Tmod) family of actin filament pointed end-capping proteins. A novel gene with significant similarity to the 64-kDa human autoantigen D1 has been cloned from both humans and mice, and the genomic sequences of both genes have been identified. These genes form a subfamily closely related to the Tmods and are here named the Leiomodins (Lmods). Both Lmod genes display a conserved intron-exon structure, as do three Tmod genes, but the intron-exon structure of the Lmods and the Tmods is divergent. mRNA expression analysis indicates that the gene formerly known as the 64-kDa autoantigen D1 is most highly expressed in a variety of human tissues that contain smooth muscle, earning it the name smooth muscle Leiomodin (SM-Lmod; HGMW-approved symbol LMOD1). Transcripts encoding the novel Lmod gene are present exclusively in fetal and adult heart and adult skeletal muscle, and it is here named cardiac Leiomodin (C-Lmod; HGMW-approved symbol LMOD2). Human C-Lmod is located near the hypertrophic cardiomyopathy locus CMH6 on human chromosome 7q3, potentially implicating it in this disease. Our data demonstrate that the Lmods are evolutionarily related and display tissue-specific patterns of expression distinct from, but overlapping with, the expression of Tmod isoforms. Copyright 2001 Academic Press.

  3. Use of Augmentative and Assistive Communication Strategies by Family Members in the ICU

    Science.gov (United States)

    Broyles, Lauren M.; Tate, Judith A.; Happ, Mary Beth

    2013-01-01

    Background Very little is known about patient-family communication during critical illness and mechanical ventilation in the intensive care unit (ICU), including the use of augmentative and alternative communication (AAC) tools and strategies during patient-family communication. Objectives The study objectives were to identify (1) which AAC tools families use with nonspeaking ICU patients and how they are used, and (2) what families and nurses say about patient-family communication with nonspeaking patients in the ICU. Methods A qualitative secondary analysis was conducted of existing data from a clinical trial testing interventions to improve nurse-patient communication in the ICU. Narrative study data (field notes, intervention logs, nurse interviews) from 127 critically ill adults were reviewed for evidence of family involvement with AAC tools. Qualitative content analysis was applied for thematic description of family and nurse accounts of patient-family communication. Results Family involvement with AAC tools was evident in 44% (n= 41/93) of the patients completing the parent study protocol. Spouses/significant others communicated with patients most often. Writing was the most frequently used tool. Main themes describing patient-family communication included: (1) Families as unprepared and unaware; (2) Family perceptions of communication effectiveness; (3) Nurses deferring to or guiding patient-family communication; (4) Patient communication characteristics; and (5) Family experience and interest with AAC tools. Conclusions Families are typically unprepared for the communication challenges of critical illness, and often “on their own” in confronting them. Assessment by skilled bedside clinicians can reveal patient communication potential and facilitate useful AAC tools and strategies for patients and families. PMID:22381993

  4. Research involving subjects with Alzheimer's disease in Italy: the possible role of family members.

    Science.gov (United States)

    Porteri, Corinna; Petrini, Carlo

    2015-03-04

    Alzheimer's disease is a very common, progressive and still incurable disease. Future possibilities for its cure lie in the promotion of research that will increase our knowledge of the disorder's causes and lead to the discovery of effective remedies. Such research will necessarily involve individuals suffering from Alzheimer's disease. This raises the controversial issue of whether patients with Alzheimer's disease are competent to give their consent for research participation. We discuss the case of subjects with Alzheimer's disease who may have impaired decision-making capacity and who could be involved in research protocols, taking into consideration aspects of the Italian normative framework, which requires a court-appointed legal representative for patients who are not able to give consent and does not recognise the legal value of advance directives. We show that this normative framework risks preventing individuals with Alzheimer's disease from taking part in research and that a new policy that favours research while promoting respect for patients' well-being and rights needs to be implemented. We believe that concerns about the difficulty of obtaining fully valid consent of patients with Alzheimer's disease should not prevent them from participating in clinical trials and benefiting from scientific progress. Therefore, we argue that the requirement for patients to have a legal representative may not be the best solution in all countries and clinical situations, and suggest promoting the role of patients' family members in the decision-making process. In addition, we outline the possible role of advance directives and ethics committees.

  5. Impact of family history assessment on communication with family members and health care providers: A report from the Family Healthware™ Impact Trial (FHITr).

    Science.gov (United States)

    Wang, Catharine; Sen, Ananda; Plegue, Melissa; Ruffin, Mack T; O'Neill, Suzanne M; Rubinstein, Wendy S; Acheson, Louise S

    2015-08-01

    This study examines the impact of Family Healthware™ on communication behaviors; specifically, communication with family members and health care providers about family health history. A total of 3786 participants were enrolled in the Family Healthware™ Impact Trial (FHITr) in the United States from 2005-7. The trial employed a two-arm cluster-randomized design, with primary care practices serving as the unit of randomization. Using generalized estimating equations (GEE), analyses focused on communication behaviors at 6month follow-up, adjusting for age, site and practice clustering. A significant interaction was observed between study arm and baseline communication status for the family communication outcomes (p'scommunicating at baseline and those who were not. Among participants who were not communicating at baseline, intervention participants had higher odds of communicating with family members about family history risk (OR=1.24, p=0.042) and actively collecting family history information at follow-up (OR=2.67, p=0.026). Family Healthware™ did not have a significant effect on family communication among those already communicating at baseline, or on provider communication, regardless of baseline communication status. Greater communication was observed among those at increased familial risk for a greater number of diseases. Family Healthware™ prompted more communication about family history with family members, among those who were not previously communicating. Efforts are needed to identify approaches to encourage greater sharing of family history information, particularly with health care providers. Copyright © 2015 Elsevier Inc. All rights reserved.

  6. Family Members' Views on Seeking Placement in State-Supported Living Centers in Texas

    Science.gov (United States)

    Colvin, Alex D.; Larke, Patricia J.

    2013-01-01

    This study investigated the factors that influence family members' decisions to seek placement for relatives with intellectual and/or developmental disabilities (ID/DD) into state-supported living centers in Texas. The sample included 51 family caregivers between the ages of 26 and 95. Using descriptive statistics, correlation, and inferential…

  7. Parent Perspectives: Understanding Support Systems for Kindergarteners with Special Needs and Their Family Members

    Science.gov (United States)

    Okraski, Ronni

    2017-01-01

    Having a child with special needs can be overwhelming, emotionally draining and extremely stressful for parents and their family members. Research identifies the support systems families need in order to have quality-of-life. The current study uses mixed methods to evaluate the degree to which parents and other primary caregivers in Arizona view…

  8. Chemotherapy treatment decision-making experiences of older adults with cancer, their family members, oncologists and family physicians: a mixed methods study.

    Science.gov (United States)

    Puts, Martine T E; Sattar, Schroder; McWatters, Kara; Lee, Katherine; Kulik, Michael; MacDonald, Mary-Ellen; Jang, Raymond; Amir, Eitan; Krzyzanowska, Monika K; Leighl, Natasha; Fitch, Margaret; Joshua, Anthony M; Warde, Padraig; Tourangeau, Ann E; Alibhai, Shabbir M H

    2017-03-01

    Although comorbidities, frailty, and functional impairment are common in older adults (OA) with cancer, little is known about how these factors are considered during the treatment decision-making process by OAs, their families, and health care providers. Our aim was to better understand the treatment decision process from all these perspectives. A mixed methods multi-perspective longitudinal study using semi-structured interviews and surveys with 29 OAs aged ≥70 years with advanced prostate, breast, colorectal, or lung cancer, 24 of their family members,13 oncologists, and 15 family physicians was conducted. The sample was stratified on age (70-79 and 80+). All interviews were analyzed using thematic analysis. There was no difference in the treatment decision-making experience based on age. Most OAs felt that they should have the final say in the treatment decision, but strongly valued their oncologists' opinion. "Trust in my oncologist" and "chemotherapy as the last resort to prolong life" were the most important reasons to accept treatment. Families indicated a need to improve communication between them, the patient and the specialist, particularly around goals of treatment. Comorbidity and potential side-effects did not play a major role in the treatment decision-making for patients, families, or oncologists. Family physicians reported no involvement in decisions but desired to be more involved. This first study using multiple perspectives showed neither frailty nor comorbidity played a role in the treatment decision-making process. Efforts to improve communication were identified as an opportunity that may enhance quality of care. In a mixed methods study multiple perspective study with older adults with cancer, their family members, their oncologist and their family physician we explored the treatment decision making process and found that most older adults were satisfied with their decision. Comorbidity, functional status and frailty did not impact the

  9. The Relationship Between the Perceived Risk of Harm by a Family Member with Mental Illness and the Family Experience.

    Science.gov (United States)

    Katz, Judith; Medoff, Deborah; Fang, Li Juan; Dixon, Lisa B

    2015-10-01

    Family members of people with serious mental illness (SMI) at times report that they act to stop their ill relative from self harm or harming others. This study examines the relationship between the perception of risk of harm and family distress, burden, empowerment, coping, physical and mental health, appraisal of the caregiving experience, family communication, and family functioning. The study is a secondary analysis of baseline data collected for a randomized study of the family-to-family peer driven education program (FTF). Four hundred thirty-four enrolled individuals who were seeking to participate in FTF completed survey items that asked if they had tried to stop or prevent their ill family member from harming themselves or others in the last 30 days. Participants who perceived a recent risk of harm by their ill relative reported more negative appraisals of caregiving, greater psychological distress, poorer mental health and greater objective burden compared with those who did not perceive a recent risk of harm. The results suggest that families of persons with SMI should be asked about perceived risk of harm to self and others, and the presence of perceived risk of harm should serve as a red flag indicating the need for further evaluation of the family experience and additional support for the family.

  10. Difficult relationships--interactions between family members and staff in long-term care.

    Science.gov (United States)

    Norris, S

    2000-01-01

    Staff of long-term care facilities and family members have a common responsibility to ensure the best course of treatment and everyday care for residents who often cannot speak for themselves. Understanding the difference between instrumental and preservative care, and who the proper agent is to provide care in each category will not only improve staff/family interactions, but residential care in general. The Resident Enrichment and Activity Program improves the family/staff relationship obliquely by involving family in social activities; the Family Involvement in Care program, and the Patterns in Caregiving program directly target the relationship and involve the facility's administration to effect policy change.

  11. Complex Determinants in Specific Members of the Mannose Receptor Family Govern Collagen Endocytosis

    DEFF Research Database (Denmark)

    Jürgensen, Henrik J; Johansson, Kristina; Madsen, Daniel H

    2014-01-01

    Members of the well-conserved mannose receptor (MR) protein family have been functionally implicated in diverse biological and pathological processes. Importantly, a proposed common function is the internalization of collagen for intracellular degradation occurring during bone development, cancer...... invasion, and fibrosis protection. This functional relationship is suggested by a common endocytic capability and a candidate collagen-binding domain. Here we conducted a comparative investigation of each member's ability to facilitate intracellular collagen degradation. As expected, the family members u......PARAP/Endo180 and MR bound collagens in a purified system and internalized collagens for degradation in cellular settings. In contrast, the remaining family members, PLA2R and DEC-205, showed no collagen binding activity and were unable to mediate collagen internalization. To pinpoint the structural elements...

  12. NWHSS Implement Family Member Assessment Component in the Millennium Cohort Study

    Science.gov (United States)

    2012-10-01

    Response and Referral Rates (McMaster) Panel 4 Impact of Cognitive Dissonance Improvement Strategies *Open Discussion* Family Improvement... Cognitive Dissonance (Via Effort Justification) Study  This pilot study utilized a random selection of married Panel 4 Millennium Cohort members taking...Spousal and family  functioning  Determine service member  factors that are associated  with spouse reports of  marital  satisfaction  and  family

  13. Development and Examination of a Family Triadic Measure to Examine Quality of Life Family Congruence in Nursing Home Residents and Two Family Members.

    Science.gov (United States)

    Aalgaard Kelly, Gina

    2015-01-01

    Objective: The overall purpose of this study was to propose and test a conceptual model and apply family analyses methods to understand quality of life family congruence in the nursing home setting. Method: Secondary data for this study were from a larger study, titled Measurement, Indicators and Improvement of the Quality of Life (QOL) in Nursing Homes . Research literature, family systems theory and human ecological assumptions, fostered the conceptual model empirically testing quality of life family congruence. Results: The study results supported a model examining nursing home residents and two family members on quality of life family congruence. Specifically, family intergenerational dynamic factors, resident personal and social-psychological factors, and nursing home family input factors were examined to identify differences in quality of life family congruence among triad families. Discussion: Formal family involvement and resident cognitive functioning were found as the two most influential factors to quality of life family congruence (QOLFC).

  14. Facebook as a tool for communication, collaboration, and informal knowledge exchange among members of a multisite family health team

    Directory of Open Access Journals (Sweden)

    Lofters AK

    2016-01-01

    Full Text Available Aisha K Lofters,1,2 Morgan B Slater,1 Emily Nicholas Angl,1 Fok-Han Leung1 1Department of Family and Community Medicine, 2Centre for Research on Inner City Health, Li Ka Shing Knowledge Institute, St Michael's Hospital, University of Toronto, Toronto, ON, Canada Objective: To implement and evaluate a private Facebook group for members of a large Ontario multisite Family Health Team (FHT to facilitate improved communication and collaboration. Design: Program implementation and subsequent survey of team members. Setting: A large multisite FHT in Toronto, Ontario. Participants: Health professionals of the FHT. Main outcome measures: Usage patterns and self-reported perceptions of the Facebook group by team members. Results: At the time of the evaluation survey, the Facebook group had 43 members (37.4% of all FHT members. Activity in the group was never high, and posts by team members who were not among the researchers were infrequent throughout the study period. The content of posts fell into two broad categories: 1 information that might be useful to various team members and 2 questions posed by team members that others might be able to answer. Of the 26 team members (22.6% who completed the evaluation survey, many reported that they never logged into the Facebook page (16 respondents, and never used it to communicate with team members outside of their own site of practice (19 respondents. Only six respondents reported no concerns with using Facebook as a professional communication tool; the most frequent concerns were regarding personal and patient privacy. Conclusion: The use of social media by health care practitioners is becoming ubiquitous. However, the issues of privacy concerns and determining how to use social media without adding to provider workload must be addressed to make it a useful tool in health care. Keywords: social media, team-based care, communication, interprofessionalism, social network

  15. Impact of Family History Assessment on Communication with Family Members and Health Care Providers: A report from the Family Healthware™ Impact Trial (FHITr)

    Science.gov (United States)

    Wang, Catharine; Sen, Ananda; Plegue, Melissa; Ruffin, Mack T.; O'Neill, Suzanne M.; Rubinstein, Wendy S.; Acheson, Louise S.

    2015-01-01

    Objective This study examines the impact of Family Healthware™ on communication behaviors; specifically, communication with family members and health care providers about family health history. Methods A total of 3786 participants were enrolled in the Family Healthware™ Impact Trial (FHITr) in the United States from 2005-7. The trial employed a two-arm cluster-randomized design, with primary care practices serving as the unit of randomization. Using generalized estimating equations (GEE), analyses focused on communication behaviors at 6 month follow-up, adjusting for age, site and practice clustering. Results A significant interaction was observed between study arm and baseline communication status for the family communication outcomes (psfamily members about family history risk (OR=1.24, p=0.042) and actively collecting family history information at follow-up (OR=2.67, p=0.026). Family Healthware™ did not have a significant effect on family communication among those already communicating at baseline, or on provider communication, regardless of baseline communication status. Greater communication was observed among those at increased familial risk for a greater number of diseases. Conclusion Family Healthware™ prompted more communication about family history with family members, among those who were not previously communicating. Efforts are needed to identify approaches to encourage greater sharing of family history information, particularly with health care providers. PMID:25901453

  16. Quotidian of accompanying family members in an environment of care: the emergence of hospital tribes

    Directory of Open Access Journals (Sweden)

    Silvia da Silva Santos Passos

    2016-06-01

    Full Text Available ABSTRACT OBJECTIVE Understand the quotidian relationships of accompanying family members in an environment of care, which are close to the metaphor of a tribe in hospital environment. METHODQualitative study with data gathered from semi-structured interviews and observations with 16 family members accompanying hospitalized individuals with dependence on self-care. Data were submitted to thematic analysis, and analyzed through the metaphor of "tribe" proposed by comprehensive sociology. RESULTS Family members build up social clusters around caring, where we find traits typical of tribes: emotional ambience; solidarity based on links of sympathy and mutual assistance; an affectual nebula in the process of interaction; a logic of fusion in tactile relations; and communion/religiosity in the process of connecting in a collective identity. CONCLUSION In the presence of tragedy, families build social clusters similar to tribes having care as a totem.

  17. 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...

  18. The European Gaucher Alliance: a survey of member patient organisations' activities, healthcare environments and concerns.

    Science.gov (United States)

    Žnidar, Irena; Collin-Histed, Tanya; Niemeyer, Pascal; Parkkinen, Johanna; Lauridsen, Anne-Grethe; Zariņa, Sandra; Cohen, Yossi; Manuel, Jeremy

    2014-09-02

    The European Gaucher Alliance (EGA) was established in 1994 and constituted in 2008 as an umbrella group supporting patient organisations for Gaucher disease. Every two years, the EGA conducts a questionnaire survey of member associations to help develop its priorities and annual work programme. Results of the latest survey are presented. Between June 2012 and April 2013, the 36 members and associate members of the EGA were asked to complete a questionnaire detailing membership numbers, disease specific treatments used by patients, means of access to treatment, availability of treatment centres and home infusions, sources of support for patients with Gaucher disease, patient organisations' activities, collaborations, funding sources and any issues of concern. Questionnaires completed in 2012 were revised in January 2013 and responses analysed between July and September 2013. Thirty three members returned data on one or more questions. Findings identified inequalities in access to treatment both within and between members' countries. Three of 27 countries, for which data were available, relied totally on humanitarian aid for treatment and 6% of untreated patients in 20 countries were untreated because of funding issues, a situation many feared would worsen with deteriorating economic climates. Access to treatment and reimbursement represented 45% of members' concerns, while 35% related to access to specialist treatment centres, home infusions and doctors with expertise in Gaucher disease. Member associations' main activities centred on patient support (59% of responses) and raising awareness of Gaucher disease and patients' needs amongst the medical community, government and healthcare decision makers and the general public (34% of responses). Twenty one (78% of respondents) indicated they were the only source of help for Gaucher disease patients in their country. For many, activities were constrained by funds; two members had no external funding source. Activities

  19. The bereavement process of tissue donors' family members: responses of grief, posttraumatic stress, personal growth, and ongoing attachment.

    Science.gov (United States)

    Hogan, Nancy; Schmidt, Lee; Coolican, Maggie

    2014-09-01

    Donated tissues can save lives of critically burned patients and those needing a heart valve replacement. Tissues enhance the lives of a million recipients annually through transplants of corneas, bones, tendons, and vein grafts. Unfortunately, the need for some tissues exceeds their availability. The goal of the quantitative component of this mixed methods study was to identify the grief, posttraumatic stress, personal growth, and ongoing attachment response of tissue donors' family members during a 2-year period. Simultaneous mixed methods design. The sample for this study consisted of 52 tissue donors' family members, mostly widows (83%). Data were collected for 2 years to test changes in grief, posttraumatic stress, panic behavior, personal growth, and ongoing attachment. The bereaved participants experienced significantly fewer grief reactions, less posttraumatic stress, and greater personal growth. There was no significant difference in the ongoing attachment to their deceased loved ones. The results of this study may reinforce the positive meaning that tissue donors' family members can find in tissue donation. Findings also demonstrate that the bereavement process corroborates contemporary bereavement and attachment theories. Health professionals are encouraged to seek donations with less worry that tissue donors' family members will experience adverse outcomes during bereavement.

  20. 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.

  1. Family members' views on the benefits of harp music vigils for terminally-ill or dying loved ones.

    Science.gov (United States)

    Ganzini, Linda; Rakoski, Alexa; Cohn, Sharilyn; Mularski, Richard A

    2015-02-01

    Music-thanatology is a palliative modality that uses harp and voice to provide bedside vigils, particularly for terminally ill or actively dying. We sought to determine the benefits of music vigils for terminally ill patients. Survey of 55 family members, whose terminally ill loved one experienced a music vigil during hospitalization, regarding effects on the patient's breathing, relaxation, comfort, pain and ability to sleep. Written comments on negative and positive results of the vigils were coded using content analysis. Family members perceived that the vigils resulted in modest improvement in the patients' breathing, relaxation, comfort, and ability to sleep, with fewer positive effects on pain, and almost no negative effects. Open ended comments focused on the positive benefit in increasing calm, relaxation, comfort. Comments on the positive effects for the family were almost as common as comments on the positive results for the patient. The use of music-vigils in palliative care should be investigated more extensively as our study supports that this intervention has benefits, almost no risk, minimal cost, and may improve patient-family experience of the dying process.

  2. Resilience in family members of persons with autism spectrum disorder: a review of the literature.

    Science.gov (United States)

    Bekhet, Abir K; Johnson, Norah L; Zauszniewski, Jaclene A

    2012-10-01

    Worldwide, caregivers find caring for children with Autism Spectrum Disorder (ASD) challenging. Family members must manage many aspects of care giving, which is demanding, overwhelming, and can affect the family members' mental health. However learning how to be resilient may help family members overcome the stress and burden associated with caring for a person with ASD. A search was completed in Medline, PsycINFO, Proquest, Web of Science, and CINAHL using the key words "autism," "caregivers," "mothers," and "fathers," alone and in combination. Inclusion criteria were English language articles reporting studies with samples of children with ASD, as distinct from children with other intellectual or developmental disabilities. Fifty-eight articles that met these inclusion criteria were summarized and, from those, the authors selected 22 articles that included indicators of resilience. This integrative review highlights current research on resilience in adult family members of persons with ASD. Indicators of resilience, risk factors, protective factors, and outcomes of resilience were identified. The review indicates that parents of children with ASD who possess indicators of resilience are better able to manage the adversity associated with caring for children with ASD. Thus, enhancing resilience among family members of persons with autism may be beneficial to both the caregivers and care recipients.

  3. Effects of cognitive-behavioral treatment for weight loss in family members.

    Science.gov (United States)

    Rossini, Raffaella; Moscatiello, Simona; Tarrini, Giulietta; Di Domizio, Silvia; Soverini, Valentina; Romano, Andreina; Mazzotti, Arianna; Dalle Grave, Riccardo; Marchesini, Giulio

    2011-11-01

    The possibility that lifestyle changes may be shared by the family members of subjects with obesity attending cognitive-behavioral treatment (CBT) for weight loss has been scarcely evaluated. The purpose of this study was to measure the changes in body weight, lifestyle habits, and stage of change toward physical activity in the family members of 149 subjects with overweight/obesity enrolled into a weekly group CBT for weight management in the years 2007-2008. 230 adult (aged >18 years) family members (129 spouses, 72 children (43 female, 29 male), 29 with a different family relationship) completed a self-administered questionnaire at baseline and soon after the end of the completion of their relatives' program (approximately 6 months later). The questionnaire consisted of qualitative information regarding food choices, estimation of energy and food intake, self-report of height and weight, and motivation toward physical activity. At baseline, self-reported body mass index was normal in 115 cases, in the range 25 to 29.9 in 80 and ≥30 in 35. Following CBT of their relatives, the family members significantly reduced their average daily energy intake (-232 kcal/day; Pfood choices revealed a reduced average daily amount of energy from dressings (-40 kcal, Pbread (-58 kcal, P<0.001), breakfast biscuits (-23 kcal, P=0.005), chocolate (-7 kcal, P=0.024), and nonalcoholic beverages (fruit juices and carbonated drinks; -10 kcal; P=0.013), whereas fruit consumption was increased (+10 kcal; P=0.023). There was also a shift in the stage of change toward exercising. Body mass index changes of family members and CBT subjects were significantly correlated, mainly within spouses. In conclusion, CBT for weight loss positively influences the lifestyle habits of family members of participants, reducing energy intake and promoting a more favorable attitude toward physical activity. Copyright © 2011 American Dietetic Association. Published by Elsevier Inc. All rights reserved.

  4. Are characteristics of team members important for quality management of chronic patients at primary care level?

    Science.gov (United States)

    Klemenc-Ketis, Zalika; Poplas-Susič, Antonija

    2017-12-01

    To determine the possible associations between higher levels of selected quality indicators and the characteristics of providers. In 2011, an ongoing project on a new model of family medicine practice was launched in Slovenia; the family physicians' working team (a family physician and a practice nurse) was extended by a nurse practitioner working 0.5 full-time equivalents. This was an example of a personalised team approach to managing chronic patients. We included all family medicine practices in the six units of the Community Health Centre Ljubljana which were participating in the project in December 2015 (N = 66). Data were gathered from automatic electronic reports on quality indicators provided monthly by each practice. We also collected demographic data. There were 66 family medicine teams in the sample, with 165 members of their teams (66 family physicians, 33 nurse practitioners and 66 practice nurses). Fifty-six (84.4%) of the family physicians were women, as were 32 (97.0%) of the nurse practitioners, and 86 (95.5%) of the practice nurses. Multivariate analysis showed that a higher level of the quality indicator "Examination of diabetic foot once per year" was independently associated with nurse practitioners having attended additional education on diabetes, duration of participation in the project, age and years worked since graduation of nurse practitioners, working in the Center unit and not working in the Bezigrad unit. Characteristics of team members are important in fostering quality management of chronic patients. Nurse practitioners working in new model family practices need obligatory, continuous professional education in the management of chronic patients. The quality of care of chronic patients depends on the specific characteristics of the members of the team, which should be taken into account when planning quality improvements. © 2017 John Wiley & Sons Ltd.

  5. Psychological Support for Families During Crises (as exemplified by families members of Ukrainian war veterans

    Directory of Open Access Journals (Sweden)

    Yablonska Tetiana

    2017-06-01

    Full Text Available The goal of the article is to describe the theoretical and empirical research of characteristics of families under non-normative crises, having as an example the families of combatants participated in the anti-terrorist operation in Ukraine. The following family crises are discussed: normative crises, as period of transition from one stage of the family life cycle to another and non-normative crises caused by traumatic life events.

  6. Predicting the number and sizes of IBD regions among family members and evaluating the family size requirement for linkage studies.

    Science.gov (United States)

    Yang, Wanling; Wang, Zhanyong; Wang, Lusheng; Sham, Pak-Chung; Huang, Peng; Lau, Yu Lung

    2008-12-01

    With genotyping of high-density single nucleotide polymorphisms (SNPs) replacing that of microsatellite markers in linkage studies, it becomes possible to accurately determine the genomic regions shared identity by descent (IBD) by family members. In addition to evaluating the likelihood of linkage for a region with the underlining disease (the LOD score approach), an appropriate question to ask is what would be the expected number and sizes of IBD regions among the affecteds, as there could be more than one region reaching the maximum achievable LOD score for a given family. Here, we introduce a computer program to allow the prediction of the total number of IBD regions among family members and their sizes. Reversely, it can be used to predict the portion of the genome that can be excluded from consideration according to the family size and user-defined inheritance mode and penetrance. Such information has implications on the feasibility of conducting linkage analysis on a given family of certain size and structure or on a few small families when interfamily homogeneity can be assumed. It can also help determine the most relevant members to be genotyped for such a study. Simulation results showed that the IBD regions containing true mutations are usually larger than regions IBD due to random chance. We have made use of this feature in our program to allow evaluation of the identified IBD regions based on Bayesian probability calculation and simulation results.

  7. An audit of clinical service examining the uptake of genetic testing by at-risk family members.

    Science.gov (United States)

    Forrest, Laura; Delatycki, Martin; Curnow, Lisette; Gen Couns, M; Skene, Loane; Aitken, Maryanne

    2012-01-01

    The aim of this study was to investigate the uptake of genetic testing by at-risk family members for four genetic conditions: chromosomal translocations, fragile X syndrome, Huntington disease, and spinal muscular atrophy. A clinical audit was undertaken using genetics files from Genetic Health Services Victoria. Data were extracted from the files regarding the number of at-risk family members and the proportion tested. Information was also collected about whether discussion of at-risk family members and family communication during the genetic consultation was recorded. The proportion of at-risk family members who had genetic testing ranged from 11% to 18%. First-degree family members were most frequently tested and the proportion of testing decreased by degree of relatedness to the proband. Smaller families were significantly more likely to have genetic testing for all conditions except Huntington disease. Female at-risk family members were significantly more likely to have testing for fragile X syndrome. The majority of at-risk family members do not have genetic testing. Family communication is likely to influence the uptake of genetic testing by at-risk family members and therefore it is important that families are supported while communicating to ensure that at-risk family members are able to make informed decisions about genetic testing.

  8. In Asian americans, is having a family member diagnosed with cancer associated with fatalistic beliefs?

    Directory of Open Access Journals (Sweden)

    Carolee Polek

    2016-01-01

    Full Text Available Objective: Cancer can evoke long-held cultural beliefs which either facilitate or impede efforts to expand the health literacy of families. Among these beliefs is fatalism which holds that controlling ones′ outcome is not possible, and that ones′ outcome is predestined. Some fatalistic beliefs are broadly held within the Asian American (AA community and may be challenged or reinforced by the experience of having a family member diagnosed with cancer. This study evaluated the relationship between having a family member diagnosed with cancer and selected demographics in AAs on fatalistic beliefs. Methods: Data from 519 AA subjects from the Centers for Disease Control and Prevention Health Information Trends Survey were used to complete a secondary analysis. Descriptive statistics characterize fatalistic beliefs. Four models using four questions assessed fatalistic beliefs as dependent variables and independent variables of having or not having a family member diagnosed with cancer, completing college or not, sex, and age were assessed using ordinal regression. Results: All of the fatalistic beliefs examined were endorsed by large portions of the subjects. When considering the role of being exposed to having a family member with cancer, it was associated with an increase in the likelihood in a belief that one is likely to get cancer, and everything can cause cancer. Being exposed to a family member diagnosed with cancer was not significantly associated with believing, there was little one could do to control their cancer risk. This belief was broadly rejected. While the belief that there are so many different recommendations about preventing cancer, it is hard to know what to do, was broadly endorsed and not associated with having a family member diagnosed with cancer. Conclusions: The major practice implications within oncology nursing suggest the importance in assessing cancer health literacy and providing corrective knowledge in families

  9. Effect of unaffordable medical need on distress level of family member: analyses of 1997?2013 United States National Health Interview Surveys

    OpenAIRE

    Chih, Hui Jun; Liang, Wenbin

    2017-01-01

    Background Reduced funding to public health care systems during economic downturns is a common phenomenon around the world. The effect of health care cost on family members of the patients has not been established. This paper aims to explore the relationship between affordability of health care and vulnerability of family members to distress levels. Methods Data of a total of 262,843 participants were obtained from 17 waves (1997?2013) of the United States National Health Interview Survey. Mu...

  10. Payment or reimbursement for certain medical expenses for Camp Lejeune family members. Interim final rule.

    Science.gov (United States)

    2014-09-24

    The Department of Veterans Affairs (VA) is promulgating regulations to implement statutory authority to provide payment or reimbursement for hospital care and medical services provided to certain veterans' family members who resided at Camp Lejeune, North Carolina, for at least 30 days during the period beginning on January 1, 1957, and ending on December 31, 1987. Under this rule, VA will reimburse family members, or pay providers, for medical expenses incurred as a result of certain illnesses and conditions that may be attributed to exposure to contaminated drinking water at Camp Lejeune during this time period. Payment or reimbursement will be made within the limitations set forth in statute and Camp Lejeune family members will receive hospital care and medical services that are consistent with the manner in which we provide hospital care and medical services to Camp Lejeune veterans.

  11. The Facilitators and Barriers to Communication between Nurses and Family Member in Intensive Care Unit in Kerman, Iran

    Directory of Open Access Journals (Sweden)

    Laleh loghmani

    2014-02-01

    Full Text Available Introduction: The communication between nurses and patients' families is commun- ication significantly 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. Methods: This study was conducted by the grounded theory method. Participants comprised eight registered nurses and ten 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 performed according to the Strauss and Corbin method (1998. Results: According to data analysis, Facilitative factors between nurses and families' communication consisted of two categories, i spiritual care, emotional support, Participation, notification and consultation and Barriers that were three categories: i misunderstandings regarding treatment ii job and iii patient difficulties.Conclusion: 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 and rules and using patient-based approach we can have effective communication.

  12. Comparative analysis of lysyl oxidase (like) family members in pulmonary fibrosis.

    Science.gov (United States)

    Aumiller, Verena; Strobel, Benjamin; Romeike, Merrit; Schuler, Michael; Stierstorfer, Birgit E; Kreuz, Sebastian

    2017-03-10

    Extracellular matrix (ECM) composition and stiffness are major driving forces for the development and persistence of fibrotic diseases. Lysyl oxidase (LOX) and LOX-like (LOXL) proteins play crucial roles in ECM remodeling due to their collagen crosslinking and intracellular functions. Here, we systematically investigated LOX/L expression in primary fibroblasts and epithelial cells under fibrotic conditions, Bleomycin (BLM) induced lung fibrosis and in human IPF tissue. Basal expression of all LOX/L family members was detected in epithelial cells and at higher levels in fibroblasts. Various pro-fibrotic stimuli broadly induced LOX/L expression in fibroblasts, whereas specific induction of LOXL2 and partially LOX was observed in epithelial cells. Immunohistochemical analysis of lung tissue from 14 IPF patients and healthy donors revealed strong induction of LOX and LOXL2 in bronchial and alveolar epithelium as well as fibroblastic foci. Using siRNA experiments we observed that LOXL2 and LOXL3 were crucial for fibroblast-to-myofibroblast transition (FMT). As FMT could only be reconstituted with an enzymatically active LOXL2 variant, we conclude that LOXL2 enzymatic function is crucial for fibroblast transdifferentiation. In summary, our study provides a comprehensive analysis of the LOX/L family in fibrotic lung disease and indicates prominent roles for LOXL2/3 in fibroblast activation and LOX/LOXL2 in IPF.

  13. Seasonal variation in family member perceptions of physician competence in the intensive care unit: findings from one academic medical center.

    Science.gov (United States)

    Stevens, Jennifer P; Kachniarz, Bart; O'Reilly, Kristin; Howell, Michael D

    2015-04-01

    Researchers have found mixed results about the risk to patient safety in July, when newly minted physicians enter U.S. hospitals to begin their clinical training, the so-called "July effect." However, patient and family satisfaction and perception of physician competence during summer months remain unknown. The authors conducted a retrospective observational cohort study of 815 family members of adult intensive care unit (ICU) patients who completed the Family Satisfaction with Care in the Intensive Care Unit instrument from eight ICUs at Beth Israel Deaconess Medical Center, Boston, Massachusetts, between April 2008 and June 2011. The association of ICU care in the summer months (July-September) versus other seasons and family perception of physician competence was examined in univariable and multivariable analyses. A greater proportion of family members described physicians as competent in summer months as compared with winter months (odds ratio [OR] 1.9; 95% confidence interval [CI] 1.2-3.0; P = .003). After adjustment for patient and proxy demographics, severity of illness, comorbidities, and features of the admission in a multivariable model, seasonal variation of family perception of physician competence persisted (summer versus winter, OR of judging physicians competent 2.4; 95% CI 1.3-4.4; P = .004). Seasonal variation exists in family perception of physician competence in the ICU, but opposite to the "July effect." The reasons for this variation are not well understood. Further research is necessary to explore the role of senior provider involvement, trainee factors, system factors such as handoffs, or other possible contributors.

  14. Assessing the place of neurobiological explanations in accounts of a family member's addiction.

    Science.gov (United States)

    Meurk, Carla; Fraser, Doug; Weier, Megan; Lucke, Jayne; Carter, Adrian; Hall, Wayne

    2016-07-01

    The brain disease model of addiction posits that addiction is a persistent form of neural dysfunction produced by chronic drug use, which makes it difficult for addicted persons to become and remain abstinent. As part of an anticipatory policy analysis of addiction neuroscience, we engaged family members of addicted individuals to assess their views on the place and utility of brain-based accounts of addiction. Fifteen in-depth qualitative interviews were conducted and used to develop a quantitative online survey that was completed by 55 family members. This article reports responses on what addiction is and how it is caused and responses to explanations of the brain disease model of addiction. Participants gave multiple reasons for their family members developing an addiction and there was no single dominant belief about the best way to describe addiction. Participants emphasised the importance of both scientific and non-scientific perspectives on addiction by providing multifactorial explanations of their family members' addictions. Most family members acknowledged that repeated drug use can cause changes to the brain, but they varied in their reactions to labelling addiction a 'brain disease'. They believed that understanding addiction, and how it is caused, could help them support their addicted relative. Participants' beliefs about neurobiological information and the brain disease model of addiction appeared to be driven by empathetic, utilitarian considerations rather than rationalist ones. We discuss the importance of providing information about the nature and causes of addiction. [Meurk C, Fraser D, Weier M, Lucke J, Carter A, Hall W. Assessing the place of neurobiological explanations in accounts of a family member's addiction. Drug Alcohol Rev 2016;35:461-469]. © 2015 Australasian Professional Society on Alcohol and other Drugs.

  15. Family matters : The experiences and opinions of family members of persons with (severe) or profound intellectual disabilities

    NARCIS (Netherlands)

    Luijkx, Jorien

    2016-01-01

    “I love my sister, but sometimes I don’t”. This is one of the statements made in the study focused on the experiences of family members of people with (profound) intellectual (and multiple) disabilities (both of individuals living in a residential facility as persons living at home). In recent

  16. Marriage & Family Therapy Faculty Memberâ s Balance of Work and Personal Life

    OpenAIRE

    Matheson, Jennifer L.

    2002-01-01

    This mixed-method study examines the work and personal life balance of Marriage & Family Therapy faculty members across the U.S., 16 of whom were interviewed to gain a deeper understanding of their work and personal life balance issues. Of those, six felt they had good balance, six felt they had poor balance, and four were â middle of the road.â More men than women felt they had good balance. Faculty members indicated external and internal indicators such as family and workplace message...

  17. COMBINING WORK WITH CARING FOR ELDERLY FAMILY MEMBER IN POLAND (CHOSEN ISSUES

    Directory of Open Access Journals (Sweden)

    Lukasz Jurek

    2016-07-01

    Full Text Available The problem of combining work with caring for elderly family members is becoming an increasingly important matter due to demographic (population ageing and social (increasing economic activity of women changes that are currently in progress. The aim of the article is to present selected issues related to the professional situation of people taking care for their elderly family members. The primary focus of the study is reasons for not working of non-working caregivers, and professional problems of working caregivers

  18. Protecting the privacy of family members in survey and pedigree research.

    Science.gov (United States)

    Botkin, J

    2001-01-10

    The recent controversy at Virginia Commonwealth University involving research ethics raises important and complex issues in survey and pedigree research. The primary questions are whether family members of survey respondents themselves become subjects of the project and if they are subjects whether informed consent must be obtained for investigators to retain private information on these individuals. This article provides an analysis of the ethical issues and regulatory standards involved in this debate for consideration by investigators and institutional review boards. The analysis suggests that strong protections for the rights and welfare of subjects and their family members can be incorporated into survey and pedigree research protocols without hindering projects with extensive consent requirements.

  19. Perspectives of Family Members on Using Technology in Youth Mental Health Care: A Qualitative Study.

    Science.gov (United States)

    Lal, Shalini; Daniel, Winnie; Rivard, Lysanne

    2017-06-23

    Information and communication technologies (ICTs) are increasingly recognized as having an important role in the delivery of mental health services for youth. Recent studies have evaluated young people's access and use of technology, as well as their perspectives on using technology to receive mental health information, services, and support; however, limited attention has been given to the perspectives of family members in this regard. The aim of this study was to explore the perspectives of family members on the use of ICTs to deliver mental health services to youth within the context of specialized early intervention for a first-episode psychosis (FEP). Six focus groups were conducted with family members recruited from an early intervention program for psychosis. Twelve family members participated in the study (target sample was 12-18, and recruitment efforts took place over the duration of 1 year). A 12-item semistructured focus group guide was developed to explore past experiences of technology and recommendations for the use of technology in youth mental health service delivery. A qualitative thematic analysis guided the identification and organization of common themes and patterns identified across the dataset. Findings were organized by the following themes: access and use of technology, potential negative impacts of technology on youth in recovery, potential benefits of using technology to deliver mental health services to youth, and recommendations to use technology for (1) providing quality information in a manner that is accessible to individuals of diverse socioeconomic backgrounds, (2) facilitating communication with health care professionals and services, and (3) increasing access to peer support. To our knowledge, this is among the first (or the first) to explore the perspectives of family members of youth being treated for FEP on the use of technology for mental health care. Our results highlight the importance of considering diverse experiences

  20. A New Approach for Assessing the Needs of Service Members and Their Families

    Science.gov (United States)

    2011-01-01

    their families. Nothing that I do as the Secretary of the Army is more important than this [emphasis added] ( Harvey , 2009). According to the Army...to address the physical, material, mental and spiritual needs of each member of the Total Army Family [emphasis added] ( Harvey and Schoomaker, 2006...Laurie Weinstein and Christie C. White, eds., Wives and Warriors: Women and the Military in the United States and Canada, Westport, Conn.: Greenwood

  1. [Meanings attributed by family members in pediatrics regarding their interactions with nursing professionals].

    Science.gov (United States)

    Gomes, Giovana Calcagno; Xavier, Daiani Modernel; Pintanel, Aline Campelo; Farias, Dóris Helena Ribeiro; Lunardi, Valéria Lerch; Aquino, Deise Ribeiro

    2015-12-01

    Understanding the meanings attributed by family caregivers of children in hospital environments about their interactions with nursing professionals. This qualitative study used Symbolic Interactionism as a theoretical reference and Grounded Theory as the methodological framework. It was carried out in a Pediatrics Center in southern Brazil, in the first half of 2013. Participants were 15 family caregivers of hospitalized children. Data were collected through interviews and submitted to open and axial analysis. Interactions with the nursing team enable family to trust or distrust in the provided child care and to positively evaluate the care received. Interactions between family members and the nursing team contribute to the significance attributed by the family to the nursing care received by the child. Nurses should be aware of the attitudes of the nursing team regarding the child and their family, prioritizing humanized care.

  2. Meanings attributed by family members in pediatrics regarding their interactions with nursing professionals

    Directory of Open Access Journals (Sweden)

    Giovana Calcagno Gomes

    2015-12-01

    Full Text Available Abstract OBJECTIVE Understanding the meanings attributed by family caregivers of children in hospital environments about their interactions with nursing professionals. METHODS This qualitative study used Symbolic Interactionism as a theoretical reference and Grounded Theory as the methodological framework. It was carried out in a Pediatrics Center in southern Brazil, in the first half of 2013. Participants were 15 family caregivers of hospitalized children. Data were collected through interviews and submitted to open and axial analysis. RESULTS Interactions with the nursing team enable family to trust or distrust in the provided child care and to positively evaluate the care received. CONCLUSION Interactions between family members and the nursing team contribute to the significance attributed by the family to the nursing care received by the child. Nurses should be aware of the attitudes of the nursing team regarding the child and their family, prioritizing humanized care.

  3. Profissionais de enfermagem frente ao processo de morte em unidades deterapia intensiva Profesionales de enfermería frente al proceso de muerte de pacientes de unidades de cuidados intensivos Nursing team members' reaction to dying patients and their family in a intensive care unit

    Directory of Open Access Journals (Sweden)

    Beatriz Aparecida Ozello Gutierrez

    2006-12-01

    Full Text Available OBJETIVOS: Identificar e analisar os sentimentos e as percepções dos profissionais de enfermagem de Unidades de Terapia Intensiva, no enfrentamento do processo de morrer e propor intervenções que potencializem esse enfrentamento na assistência prestada ao paciente/familiares. MÉTODOS: A pesquisa foi qualitativa e os dados foram analisados segundo a análise temática, estruturada com base na psicodinâmica do trabalho. RESULTADOS: Os resultados mostraram a necessidade de se implantar encontros sistematizados, nos quais esses profissionais tenham a oportunidade de expor suas satisfações, angústias e medos durante esse processo. CONSIDERAÇÕES FINAIS: Inexistem fórmulasque propiciem o enfrentamento da morte, mas o mesmo pode ser facilitado, desde que a morte seja encarada como um desfecho natural do processo vital.OBJETIVOS: Identificar y analizar las sentimientos y percepciones de los grupos de enfermeria en las UCIs al enfrentar el proceso de la muerte y proponer intervenciones que potencialicen ese enfrentamiento en la atención ofrecida al paciente/familiares. MÉTODOS: La investigación fue cualitativa, los datos fueron analizados según el análisis temático estructurado en la psicodinámica del trabajo. RESULTADOS: Los resultados muestran la necesidad de realizar encuentros sistemáticos, en los cuales estos profesionales tengan la oportunidad de exprear sus satisfacciones, angustias y miedos durante ese proceso. CONSIDERACIONES FINALES: No existen fórmulas que posibiliten el enfrentamiento de la muerte, pero el puedo ser facilitado, desde que la muerte sea tratada como una consecuencia natural del proceso vital.OBJECTIVE: Nursing team members have different reactions when providing care to dying patients and their family members. PURPOSE: To explore feelings and perceptions of ICUs' nursing team members who provide care for dying patients and their family and to identify these nursing team members' coping mechanism and support

  4. Qualitative systematic review: the unique experiences of the nurse-family member when a loved one is admitted with a critical illness.

    Science.gov (United States)

    Giles, Tracey M; Hall, Karen L

    2014-07-01

    To interpret and synthesize nurse-family member experiences when a critically ill loved one is admitted to hospital. Having a family member hospitalized in a critical condition is an important stressor. When the family member is also a nurse, the provision of care is more complex, yet little research exists on this issue. Systematic review using Thomas and Harden's approach to thematic synthesis of qualitative research. Primary studies were located by searching CINAHL, Proquest, Journals@Ovid, SCOPUS, Cochrane Library and Google Scholar. No date restrictions were applied due to a lack of relevant literature. All studies that met inclusion criteria were retrieved (n = 1717) and seven met the review aim. Following critical appraisal, seven studies from 1999-2011 describing the nurse-family member's experience were reviewed and synthesized. Six characteristics of the nurse-family member experience were identified: specialized knowledge; dual-role conflicts; competing expectations; building relationships; being 'let in'; and healthcare setting. Nurse-family members experience important stressors that can negatively affect their psychological health and experience as a healthcare consumer. Nurse-family members want a different type of care than other healthcare consumers. Acknowledging nurse-family members' specialized knowledge and dual role, keeping them fully informed and allowing them to be with the patient and feel in control can reduce their fear and anxiety. Further research is needed to develop a deeper understanding of the unique experiences, challenges and needs of nurse-family members to provide them with an enhanced level of care. © 2013 John Wiley & Sons Ltd.

  5. Low-income families' perceptions on the use of drugs by one of their members.

    Science.gov (United States)

    Martins, Mayra; Santos, Manoel Antonio Dos; Pillon, Sandra Cristina

    2008-01-01

    Families who are socially excluded are vulnerable to problems related to the use of psychoactive substances. This study aimed to identify the perception regarding drugs use among families that lived in extreme poverty and participated in a social-educational group in the suburbs of a city in the interior of São Paulo State. A survey-like quantitative study was conducted involving 70 members of families who participated in the social-educational groups of the Program for Integral Assistance to the Family. Results indicated that 67 (95.7%) of the subjects were married, at an average age of 37, most of them had not completed grade school, and were unemployed. Fifty five (78.6%) had a family member who used alcohol, fifty two (74,3%) smoked, and twenty three (32.9%) used some kind of illicit drug. The results also showed that living with a relative who was a drug user was perceived as problem that elicited feelings resentment, but also conformism on the part of other family members.

  6. 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.

  7. An Uncharacterized Member of the Ribokinase Family in Thermococcus kodakarensis Exhibits myo-Inositol Kinase Activity*

    Science.gov (United States)

    Sato, Takaaki; Fujihashi, Masahiro; Miyamoto, Yukika; Kuwata, Keiko; Kusaka, Eriko; Fujita, Haruo; Miki, Kunio; Atomi, Haruyuki

    2013-01-01

    Here we performed structural and biochemical analyses on the TK2285 gene product, an uncharacterized protein annotated as a member of the ribokinase family, from the hyperthermophilic archaeon Thermococcus kodakarensis. The three-dimensional structure of the TK2285 protein resembled those of previously characterized members of the ribokinase family including ribokinase, adenosine kinase, and phosphofructokinase. Conserved residues characteristic of this protein family were located in a cleft of the TK2285 protein as in other members whose structures have been determined. We thus examined the kinase activity of the TK2285 protein toward various sugars recognized by well characterized ribokinase family members. Although activity with sugar phosphates and nucleosides was not detected, kinase activity was observed toward d-allose, d-lyxose, d-tagatose, d-talose, d-xylose, and d-xylulose. Kinetic analyses with the six sugar substrates revealed high Km values, suggesting that they were not the true physiological substrates. By examining activity toward amino sugars, sugar alcohols, and disaccharides, we found that the TK2285 protein exhibited prominent kinase activity toward myo-inositol. Kinetic analyses with myo-inositol revealed a greater kcat and much lower Km value than those obtained with the monosaccharides, resulting in over a 2,000-fold increase in kcat/Km values. TK2285 homologs are distributed among members of Thermococcales, and in most species, the gene is positioned close to a myo-inositol monophosphate synthase gene. Our results suggest the presence of a novel subfamily of the ribokinase family whose members are present in Archaea and recognize myo-inositol as a substrate. PMID:23737529

  8. 78 FR 76529 - Members of a Family for Purpose of Filing CBP Family Declaration

    Science.gov (United States)

    2013-12-18

    .... Finally, the NPRM proposed to remove the phrase ``regardless of age'' where it currently appears in the... phrase is used in 19 CFR 148.34(b) and 148.103(b), which relate to the family grouping of exemptions for... duty exemption of $800 for articles acquired abroad (and not the family grouping of duty aggregation of...

  9. Why doesn't a family member of a person with advanced dementia use a substituted judgment when making a decision for that person?

    Science.gov (United States)

    Hirschman, Karen B; Kapo, Jennifer M; Karlawish, Jason H T

    2006-08-01

    The objective of this study was to identify what standard of decision making a family member uses when making medical decisions for their relative with advanced dementia. Thirty family members of patients with advanced dementia from an Alzheimer disease center and a suburban long-term care facility were interviewed using a semistructured interview. All interviews were audiotaped, transcribed, and analyzed using qualitative data analysis techniques. Family members were split almost evenly in the standard they used when making medical decisions for their relative: substituted judgment (43%) or best interests (57%). However, few who used the substituted judgment standard viewed it as distinct from best interests. Instead, both standards were taken into consideration when making medical decisions. In addition to not having discussions about healthcare preferences, the reasons for not using a substituted judgment included: the need for family consensus, unrealistic expectations of the patient, the need to incorporate their relative's quality of life into the decision, and the influence of healthcare professionals. Family members who did not have discussions about healthcare preferences identified various barriers to the discussion, including waiting too long, avoiding the topic, and the patient's denial of dementia. These data suggest several reasons why surrogate decision-makers for persons with advanced dementia do not use the substituted judgment standard and the potential value of interventions that would allow patients with early-stage dementia and their family members to discuss healthcare preferences.

  10. The anti-apoptotic members of the Bcl-2 family are attractive tumor-associated antigens

    DEFF Research Database (Denmark)

    Straten, Per thor; Andersen, Mads Hald; Andersen, Mads Hald

    2010-01-01

    Anti-apoptotic members of the Bcl-2 family (Bcl-2, Bcl-X(L) and Mcl-2) are pivotal regulators of apoptotic cell death. They are all highly overexpressed in cancers of different origin in which they enhance the survival of the cancer cells. Consequently, they represent prime candidates for anti-ca...

  11. Payment or Reimbursement for Certain Medical Expenses for Camp Lejeune Family Members. Final rule.

    Science.gov (United States)

    2017-05-05

    The Department of Veterans Affairs (VA) adopts as final an interim final rule addressing payment or reimbursement of certain medical expenses for family members of Camp Lejeune veterans. Under this rule, VA reimburses family members, or pays providers, for medical expenses incurred as a result of certain illnesses and conditions that may be associated with contaminants present in the base water supply at U.S. Marine Corps Base Camp Lejeune (Camp Lejeune), North Carolina, from August 1, 1953, to December 31, 1987. Payment or reimbursement is made within the limitations set forth in statute and Camp Lejeune family members receive hospital care and medical services that are consistent with the manner in which we provide hospital care and medical services to Camp Lejeune veterans. The statutory authority has since been amended to also include certain veterans' family members who resided at Camp Lejeune, North Carolina, for no less than 30 days (consecutive or nonconsecutive) between August 1, 1953, and December 31, 1987. This final rule will reflect that statutory change and will address public comments received in response to the interim final rule.

  12. Personality Disorder Traits During Adolescence and Relationships with Family Members During the Transition to Adulthood

    Science.gov (United States)

    Johnson, Jeffrey G.; Chen, Henian; Cohen, Patricia

    2004-01-01

    Data from the Children in the Community Transitions Study, a prospective longitudinal investigation, were used to examine the association between adolescent personality disorder (PD) traits and conflict with family members during the transition to adulthood. PD traits at mean age 16 years were associated with elevated contact and conflict with…

  13. 5 CFR 3201.106 - Employment of family members outside the Corporation.

    Science.gov (United States)

    2010-01-01

    ... Employment of family members outside the Corporation. (a) Disqualification of employees. An employee shall... relationships. A covered employee shall make a written report to an agency designee within 30 days of the... relationship; or (3) A firm or business which, to the employee's knowledge, is seeking a business or...

  14. Self-Concept and Depression among Children Who Experienced the Death of a Family Member

    Science.gov (United States)

    Nguyen, Hong T.; Scott, Amy N.

    2013-01-01

    The present study investigates the moderating effects of physical and academic self-concept on depression among children who experienced the death of a family member. Data from Phase III of the National Institute of Child Health and Human Development Study of Early Child Care was used in the present study. Having a higher physical self-concept…

  15. The Role of Interleukin-1 Family Members in the Host Defence Against Aspergillus fumigatus

    NARCIS (Netherlands)

    Gresnigt, M.S.; Veerdonk, F.L. van de

    2014-01-01

    The interleukin (IL)-1 family consists of 11 members, which all play significant roles in regulating inflammatory responses in the host. IL-1alpha and IL-1beta exert potent pro-inflammatory effects and are key players in the recruitment of neutrophils to the site of inflammation. Protective

  16. Lipase H, a new member of the triglyceride lipase family synthesized by the intestine

    NARCIS (Netherlands)

    Jin, Weijun; Broedl, Uli C.; Monajemi, Houshang; Glick, Jane M.; Rader, Daniel J.

    2002-01-01

    We report here the molecular cloning of a novel member of the triglyceride lipase family, a 2.4-kb cDNA encoding human lipase H (LIPH) and the mouse ortholog (Liph). The human LIPH cDNA encodes a 451-amino-acid protein with a lipase domain. Mouse Liph shows 85% amino acid identity and 75% nucleotide

  17. Resident and family member perceptions of cultural diversity in aged care homes.

    Science.gov (United States)

    Xiao, Lily Dongxia; Willis, Eileen; Harrington, Ann; Gillham, David; De Bellis, Anita; Morey, Wendy; Jeffers, Lesley

    2017-03-01

    Similar to many developed nations, older people living in residential aged care homes in Australia and the staff who care for them have become increasingly multicultural. This cultural diversity adds challenges for residents in adapting to the care home. This study explores: (i) residents' and family members' perceptions about staff and cultural diversity, and (ii) culturally and linguistically diverse residents' and family members' experiences. An interpretive study design employing a thematic analysis was applied. Twenty-three residents and seven family members participated in interviews. Four themes were identified from interpreting residents and family members' perceptions of the impact of cultural diversity on their adaptation to aged care homes: (i) perceiving diversity as an attraction; (ii) adapting to cross-cultural communication; (iii) adjusting to diet in the residential care home; and (iv) anticipating individualized psychosocial interactions. The findings have implications for identifying strategies to support staff from all cultural backgrounds in order to create a caring environment that facilitates positive relationships with residents and supports residents to adjust to the care home. © 2016 John Wiley & Sons Australia, Ltd.

  18. Posttraumatic Symptoms in Japanese Bereaved Family Members with Special Regard to Suicide and Homicide Cases

    Science.gov (United States)

    Ogata, Kohske; Ishikawa, Takaki; Michiue, Tomomi; Nishi, Yuko; Maeda, Hitoshi

    2011-01-01

    The authors investigated posttraumatic stress disorder (PTSD) symptoms in Japanese bereaved family members using a questionnaire. Participants were bereaved as a result of suicide and homicide (n = 51 and 49, respectively), with natural death (n = 56) as a control; and their relationships to the deceased were parent-child (n = 79), conjugal (n =…

  19. Perspectives of family members participating in cultural assessment of psychiatric disorders: findings from the DSM-5 International Field Trial.

    Science.gov (United States)

    Hinton, Ladson; Aggarwal, Neil; Iosif, Ana-Maria; Weiss, Mitchell; Paralikar, Vasudeo; Deshpande, Smita; Jadhav, Sushrut; Ndetei, David; Nicasio, Andel; Boiler, Marit; Lam, Peter; Avelar, Yesi; Lewis-Fernández, Roberto

    2015-02-01

    Despite the important roles families play in the lives of many individuals with mental illness across cultures, there is a dearth of data worldwide on how family members perceive the process of cultural assessment as well as to how to best include them. This study addresses this gap in our knowledge through analysis of data collected across six countries as part of a DSM-5 Field Trial of the Cultural Formulation Interview (CFI). At clinician discretion, individuals who accompanied patients to the clinic visit (i.e. patient companions) at the time the CFI was conducted were invited to participate in the cultural assessment and answer questions about their experience. The specific aims of this paper are (1) to describe patterns of participation of patient companions in the CFI across the six countries, and (2) to examine the comparative feasibility, acceptability, and clinical utility of the CFI from companion perspectives through analysis of both quantitative and qualitative data. Among the 321 patient interviews, only 86 (at four of 12 sites) included companions, all of whom were family members or other relatives. The utility, feasibility and acceptability of the CFI were rated favourably by relatives, supported by qualitative analyses of debriefing interviews. Cross-site differences in frequency of accompaniment merit further study.

  20. ATAR, a novel tumor necrosis factor receptor family member, signals through TRAF2 and TRAF5.

    Science.gov (United States)

    Hsu, H; Solovyev, I; Colombero, A; Elliott, R; Kelley, M; Boyle, W J

    1997-05-23

    Members of tumor necrosis factor receptor (TNFR) family signal largely through interactions with death domain proteins and TRAF proteins. Here we report the identification of a novel TNFR family member ATAR. Human and mouse ATAR contain 283 and 276 amino acids, respectively, making them the shortest known members of the TNFR superfamily. The receptor is expressed mainly in spleen, thymus, bone marrow, lung, and small intestine. The intracellular domains of human and mouse ATAR share only 25% identity, yet both interact with TRAF5 and TRAF2. This TRAF interaction domain resides at the C-terminal 20 amino acids. Like most other TRAF-interacting receptors, overexpression of ATAR activates the transcription factor NF-kappaB. Co-expression of ATAR with TRAF5, but not TRAF2, results in synergistic activation of NF-kappaB, suggesting potentially different roles for TRAF2 and TRAF5 in post-receptor signaling.

  1. Chipmunk parvovirus is distinct from members in the genus Erythrovirus of the family Parvoviridae.

    Directory of Open Access Journals (Sweden)

    Zhaojun Chen

    2010-12-01

    Full Text Available The transcription profile of chipmunk parvovirus (ChpPV, a tentative member of the genus Erythrovirus in the subfamily Parvovirinae of the family Parvoviridae, was characterized by transfecting a nearly full-length genome. We found that it is unique from the profiles of human parvovirus B19 and simian parvovirus, the members in the genus Erythrovirus so far characterized, in that the small RNA transcripts were not processed for encoding small non-structural proteins. However, like the large non-structural protein NS1 of the human parvovirus B19, the ChpPV NS1 is a potent inducer of apoptosis. Further phylogenetic analysis of ChpPV with other parvoviruses in the subfamily Parvovirinae indicates that ChpPV is distinct from the members in genus Erythrovirus. Thus, we conclude that ChpPV may represent a new genus in the family Parvoviridae.

  2. Family members facilitating community re-integration and return to productivity following traumatic brain injury - motivations, roles and challenges.

    Science.gov (United States)

    Gagnon, Alicia; Lin, Jenny; Stergiou-Kita, Mary

    2016-01-01

    This study explores the experiences of family members in supporting community re-integration and return to productive occupations of the traumatic brain injury (TBI) survivor in order to: (i) describe family members' supportive roles, (ii) determine challenges family members experience in supporting the TBI survivor; and (iii) identify supports that family members require to maintain and enhance their roles. This qualitative descriptive study involved 14 interviews with immediate family members of TBI survivors. Data was analyzed using thematic analysis. Family members expressed strong motivation and engaged in six key roles to support TBI survivors: researcher, case manager, advocate, coach, activities of daily living (ADL)/instrumental ADLs and emotional supporter. Personal and family stressors and challenges navigating the health care system were perceived as challenges in meeting demands of their supportive roles. Stigma also presented a barrier to successful community and vocational re-integration. Subsequently, family members desired more education related to the functional implications of TBI, to be connected to health care and community resources, and sought a greater family-centred care approach. Family members require on-going counseling and community supports to prevent burnout and allow for their continued engagement in their supportive roles. Further education on how to navigate the health care system, access community programs and rights to workplace accommodation is also warranted. Family members are strongly motivated to support survivors' return to productive occupation following a traumatic brain injury, but require counseling and community support to enable their on-going engagement and prevent burnout. Family members can be further empowered through the implementation of family-centred care. Family members requested further education on the long-term functional implications of TBI, how to navigate the health care system, how to access community

  3. Psychoeducational Intervention for Sexuality with the Aged, Family Members of the Aged, and People Who Work with the Aged.

    Science.gov (United States)

    White, Charles B.; Catania, Joseph A.

    1982-01-01

    Conducted and evaluated a sexual psychoeducational intervention with older persons, adult family members of older persons, and staff members of nursing homes. Results indicated significant changes in attitudes toward and knowledge about sexuality and aging and sexual behavior. (Author)

  4. 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.

  5. 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.

  6. Family medical leave. An employee benefit for working caregivers of elderly family members.

    Science.gov (United States)

    Carruth, A K; Booth, D

    1991-09-01

    Future trends include a decrease in the number of adult children, an increase in the number of individuals over age 65, single parent families, working women, and individuals with no health care insurance. As more women with multiple roles and responsibilities enter and continue as part of the work force, employers recognize the need for support of family issues. Currently many employers lack initiative to make these needed changes. The occupational health nurses' role in relation to future policy for working caregivers includes assessment of how employment and caregiving impact work performance, job satisfaction, and health; and participation in defining public policy issues.

  7. Family matters: The experiences and opinions of family members of persons with (severe) or profound intellectual disabilities

    OpenAIRE

    Luijkx, Jorien

    2016-01-01

    “I love my sister, but sometimes I don’t”. This is one of the statements made in the study focused on the experiences of family members of people with (profound) intellectual (and multiple) disabilities (both of individuals living in a residential facility as persons living at home). In recent years, there has been greater recognition of the important position of parents and siblings of people with (profound) intellectual (and multiple) disabilities and the importance of the wellbeing of all ...

  8. [Variety of thrombotic thrombocytopenic purpura clinical course in Polish family members with ADAMTS 13 gene mutation].

    Science.gov (United States)

    Hyla-Klekot, Lidia; Kucharska, Grazyna; Słonka, Karina

    2013-03-01

    The congenital form of thrombotic thrombocytopenic purpura (Upshaw-Schulman syndrom) is a result of genetically conditioned dysfunction of protease ADAMTS 13 enzyme which is responsible for von Wiellebrand factor multimer disintegration. The disease is inherited autosomally and recessively. The decrease of ADAMTS 13 activity results in intravascular clotting process activation with rapid lowering of platelet count, haemolytic anaemia, and occurence of schistocytes. Clinically, the disease is characterized by a range of symptoms such as severe jaundice in neonatal period, embolicthrombotic incidents of nervous system and progressive dysfunction of kidneys and other organs. Delaying diagnosis and hence administering of freshly frozen plasma leads to death. Molecular diagnosis allows for identification of genetical profile of the patient, and showing lowered enzyme activity is a basis for regular prophylactic plasma administration which is the protease donor. In our study we present members of a Polish family identified with ADAMTS 13 mutation. 52 old male with heterozygotic mutation of exon 29 (4143_4144insA) and in exon 19 (c2281G>A; Gly761Ser), experienced a few episodes of ischaemic stroke with ongoing neurological deficiency and developed chronic kidney disease. His 16-year old daughter with double homozygotic mutation in exon 29 (4143_4144insA) after severe episode of TTP at the age of 4 has been receiving plasma every 2 weeks for 12 years, which prevented her from other disorders. Target treatment introduced to clinical practice by means of ADAMTS 13 obtained by genetic recombination technology raises hopes.

  9. 77 FR 18143 - Members of a Family for Purpose of Filing a CBP Family Declaration

    Science.gov (United States)

    2012-03-27

    ..., stepchildren, half-siblings, legal wards, other dependents, and individuals with an in loco parentis or... collected under 19 CFR part 148 is included under OMB control number 1651-0009. There are no new collections... in the family grouping.''; and b. By revising paragraph (b) and adding a new paragraph (c). The...

  10. Stress regulated members of the plant organic cation transporter family are localized to the vacuolar membrane

    Directory of Open Access Journals (Sweden)

    Koch Wolfgang

    2008-07-01

    Full Text Available Abstract Background In Arabidopsis six genes group into the gene family of the organic cation transporters (OCTs. In animals the members of the OCT-family are mostly characterized as polyspecific transporters involved in the homeostasis of solutes, the transport of monoamine neurotransmitters and the transport of choline and carnitine. In plants little is known about function, localisation and regulation of this gene family. Only one protein has been characterized as a carnitine transporter at the plasma membrane so far. Findings We localized the five uncharacterized members of the Arabidopsis OCT family, designated OCT2-OCT6, via GFP fusions and protoplast transformation to the tonoplast. Expression analysis with RNA Gel Blots showed a distinct, organ-specific expression pattern of the individual genes. With reporter gene fusion of four members we analyzed the tissue specific distribution of OCT2, 3, 4, and 6. In experiments with salt, drought and cold stress, we could show that AtOCT4, 5 and 6 are up-regulated during drought stress, AtOCT3 and 5 during cold stress and AtOCT 5 and 6 during salt stress treatments. Conclusion Localisation of the proteins at the tonoplast and regulation of the gene expression under stress conditions suggests a specific role for the transporters in plant adaptation to environmental stress.

  11. Study of American and Chinese family members' evaluations on institutionalized care for their older parents: potential development in the future.

    Science.gov (United States)

    Li, Yushi; Buechel, Annie

    2007-01-01

    The evaluations on institutionalized care facilities from family members, after their loved ones moved into such services, are very different from culture to culture, family to family and person to person. According to a recent survey in the United States and China, it is found that different cultures and the different health conditions of the residents strongly influence family member's viewpoints on institutionalized care services. It is also found that the availability of the institutionalized care facilities plays a significant role, which strongly affects family members' evaluations on nursing home services.

  12. Effect of unaffordable medical need on distress level of family member: analyses of 1997-2013 United States National Health Interview Surveys.

    Science.gov (United States)

    Chih, Hui Jun; Liang, Wenbin

    2017-09-02

    Reduced funding to public health care systems during economic downturns is a common phenomenon around the world. The effect of health care cost on family members of the patients has not been established. This paper aims to explore the relationship between affordability of health care and vulnerability of family members to distress levels. Data of a total of 262,843 participants were obtained from 17 waves (1997-2013) of the United States National Health Interview Survey. Multinomial logistic regression was used to investigate psychological distress level as a result of having family members who experienced unmet medical needs due to cost. Among participants without family members who experienced unmet needs for medical care due to cost, risks of having 'moderate' (score of 5-12) or 'serious' (score of 13 or above) level of psychological distress were 1.0% and 11.5%, respectively. Risks of having 'moderate' or 'serious' level of psychological distress were 3.1% and 23.4%, respectively among participants with family members who experienced unmet needs. The adjusted relative risk ratio of 'moderate' and 'serious', as compared to 'normal' level of psychological distress, were 1.58 (95% confidence interval: 1.47-1.69) and 2.09 (95% confidence interval: 1.78-2.45) if one's family members experienced unmet medical needs. Unmet medical needs due to cost increases risk of distress levels experienced by family members. Careful planning and adequate funding to public health care system could be implemented to prevent any unnecessary detrimental effect on mental health among family members of the unwell and any further increment of the prevalence of mental illnesses. This recommendation aligns with the World Health Organization Mental Health Action Plan 2013-2020.

  13. Evaluation of the effect of various parameters on the amount of radiation dose received by family members after 131-I therapy

    International Nuclear Information System (INIS)

    Sarkar, S.; Dehghanpour, M.; Saghari, M.; Ghiasinezhad, M.

    2001-01-01

    The main concern with respect to discharge of patients from hospital after 131-I therapy is contamination of their surroundings and exposure of people who are in close contact with them. In this study, we evaluated absorbed dose received by home mates of these patients within one week of discharge from hospital. This study was based on 100 patients (23 patients with thyroid cancer together with 70 members of their families and 2 hyperthyroid patients plus 5 of their family members). Measurements were performed by TLD. Patients were discharged from hospital if the dose rate from a meter distance of their thyroid was below 20 μSv/hr (ICRP-60). The hospitalization period for those patients with thyroid cancer varied between 2-3 days (depending on the amount of radioactivity received). Hyperthyroid patients were treated as outpatients. Our data indicate that although hyperthyroid patients received much less activity in comparison to those with thyroid cancer, but due to the slow iodine discharge rate from their bodies, they radiated more to their surroundings. For patients with thyroid cancer, when the given activity increased from 100 mCi to 150 mCi, the average dose absorbed by their family members increased by a factor of 3. The duration of hospitalization as well as the amount of activity given to the patients have a significant effect on the amount of radiation dose received by the family members. In a group of patients who received 100 mCi of 131-I, the average radiation dose received by the family members of those patients who were hospitalized for 2 days were 1.5 times more than of those patients who were hospitalized for 3 days, whereas following therapy with 150 mCi of 131-Iodine, the average radiation dose received by the family members of those patients who were hospitalized for 2 days were about 6.5 times more than that of those who were hospitalized for 3 days. The size of the patient's house and the time that family spends with the patient at house are

  14. Risk of childhood mortality in family members of men with poor semen quality.

    Science.gov (United States)

    Hanson, Heidi A; Mayer, Erik N; Anderson, Ross E; Aston, Kenneth I; Carrell, Douglas T; Berger, Justin; Lowrance, William T; Smith, Ken R; Hotaling, James M

    2017-01-01

    What is the familial childhood mortality in first-degree (FDR) and second-degree relatives (SDR) of patients undergoing semen analysis (SA)? The relationship between infertility and congenital malformations (CM) in offspring is complex, with an increased risk of death due to CM in FDR, but not SDR, of men with lower semen parameters. Semen quality is an established predictor of men's somatic health. We can gain a better understanding of possible genetic or environmental determinants of the infertility phenotype by exploring familial aggregation of childhood mortality in relatives of men with poor semen quality. Retrospective cohort study from the Subfertility, Health and Assisted Reproduction study (cohort compiled 1996-2011) linked with patient/familial information from the Utah Population Database (UPDB). Index cases included a clinic-referred sample of 12 889 men who underwent SA and had adequate familial and follow-up data in the UPDB. Parameters of semen quality included: semen concentration, sperm count, motility, total motile count, sperm head morphology, sperm tail morphology and vitality. SA data were collected from two tertiary medical center andrology laboratories that have captured ~90% of all SA performed in Utah since 2004. Age- and sex-matched fertile controls were selected to create the comparison group for determining risk of childhood death (to age 20 years) in family members. A total of 79 750 siblings and 160 016 aunts/uncles were used to investigate the familial aggregation of childhood mortality. The main outcome was childhood mortality in FDR and SDR of men with SA and their matched controls. All-cause and cause-specific Cox proportional hazard models were used to test the association between semen quality and childhood mortality in family members. Cause-specific models were considered for cancer and CM. In the cohort of men with SA, there were 406 (1.0%) deaths in FDR and 772 (1.1%) deaths in SDR due to any cause. There was no significant

  15. SP140L, an Evolutionarily Recent Member of the SP100 Family, Is an Autoantigen in Primary Biliary Cirrhosis

    Directory of Open Access Journals (Sweden)

    Mario Saare

    2015-01-01

    Full Text Available The SP100 family members comprise a set of closely related genes on chromosome 2q37.1. The widely expressed SP100 and the leukocyte-specific proteins SP110 and SP140 have been associated with transcriptional regulation and various human diseases. Here, we have characterized the SP100 family member SP140L. The genome sequence analysis showed the formation of SP140L gene through rearrangements of the two neighboring genes, SP100 and SP140, during the evolution of higher primates. The SP140L expression is interferon-inducible with high transcript levels in B cells and other peripheral blood mononuclear cells. Subcellularly, SP140L colocalizes with SP100 and SP140 in nuclear structures that are devoid of SP110, PML, or p300 proteins. Similarly to SP100 and SP140 protein, we detected serum autoantibodies to SP140L in patients with primary biliary cirrhosis using luciferase immunoprecipitation system and immunoblotting assays. In conclusion, our results show that SP140L is phylogenetically recent member of SP100 proteins and acts as an autoantigen in primary biliary cirrhosis patients.

  16. Family members' needs and experiences of driving disruption over time following an acquired brain injury: an evolving issue.

    Science.gov (United States)

    Liang, Phyllis; Gustafsson, Louise; Liddle, Jacki; Fleming, Jennifer

    2017-07-01

    Family members often assume the role of driver for individuals who are not driving post-acquired brain injury (ABI). Given that return to driving can be unpredictable and uncertain, the impact of driving disruption on family members may vary at different stages post-injury. This study aims to understand the needs and experiences of family members over time during driving disruption following an ABI. A qualitative prospective longitudinal research design was used with semi-structured interviews at recruitment to study, 3 and 6 months later. Fourteen family members completed 41 interviews. The longitudinal data revealed four phases of driving disruption: (1) Wait and see, (2) Holding onto a quick fix, (3) No way out, and (4) Resolution and adjustment. The phases described a process of building tension and a need for support and resolution over time. Holding onto a quick fix is a pivotal phase whereby supports, such as engagement in realistic goal setting, are essential to facilitate family members' resolution of driving disruption issues. Family members who see no way out might not actively seek help and these points to a need for long-term and regular follow-ups. Future research can explore ways to support family members at these key times. Implications for rehabilitation Health professionals need to facilitate the process of fostering hope in family members to set realistic expectations of return to driving and the duration of driving disruption. It is necessary to follow-up with family members even years after ABI as the issue of driving disruption could escalate to be a crisis and family members might not actively seek help. Health professionals can consider both practical support for facilitating transport and emotional support when addressing the issue of driving disruption with family members.

  17. Narratives of family members on the suicide of older adults in an Amazonian metropolis.

    Science.gov (United States)

    Costa, André Luis Sales da; Souza, Maximiliano Loiola Ponte de

    2017-12-11

    To analyze the narratives of family members on the suicide of older adults in Manaus, State of Amazonas, Brazil. This is a qualitative study of the narratives of eight older adults, who committed suicide in the period of 2001-2012. In the analytic-interpretative process, we have tried to perform the hermeneutic double exercise: to interpret the interpretation of narrators. We have used as theoretical references authors who have investigated suicide from the perspective of gender and its correlations with the sociofamiliar context and with mental disorders. The family members would conceive the suicide of the older adults as related to losses, which would occur in a strained sociofamiliar scenario, leading to the appearance of psychopathological situations that, if not properly followed, would result in death. There would also be something inexorable in this sequence of events. The older adults, by the very time of their life, would tend to accumulate losses of different aspects in their trajectory. Their rigor and other relational limitations would simultaneously stress family relationships, favoring conflicts, and hinder adherence to treatment. This model of understanding, which has a wide support in the hegemonic medical-psychological discourse, in a sense minimizes possible self- or heteroaccusations directed at family members. Special attention should be given to identify the older adults who present losses, family conflicts, and signs of psychopathology and who do not follow-up psychosocial care services. Strategies to help older adults handle family conflicts and losses, empowering them, should be developed and made available by intersectoral actions. The adequate treatment of psychopathological conditions should be implanted in a context in which active search mechanisms also existed for older adults who abandoned follow-up. The implementation of these actions is a challenge to be faced in Manaus, State of Amazonas, Brazil, where there is a low availability

  18. Genetic analysis of a Chinese family with members affected with Usher syndrome type II and Waardenburg syndrome type IV.

    Science.gov (United States)

    Wang, Xueling; Lin, Xiao-Jiang; Tang, Xiangrong; Chai, Yong-Chuan; Yu, De-Hong; Chen, Dong-Ye; Wu, Hao

    2017-11-01

    The purpose of this study was to identify the genetic causes of a family presenting with multiple symptoms overlapping Usher syndrome type II (USH2) and Waardenburg syndrome type IV (WS4). Targeted next-generation sequencing including the exon and flanking intron sequences of 79 deafness genes was performed on the proband. Co-segregation of the disease phenotype and the detected variants were confirmed in all family members by PCR amplification and Sanger sequencing. The affected members of this family had two different recessive disorders, USH2 and WS4. By targeted next-generation sequencing, we identified that USH2 was caused by a novel missense mutation, p.V4907D in GPR98; whereas WS4 due to p.V185M in EDNRB. This is the first report of homozygous p.V185M mutation in EDNRB in patient with WS4. This study reported a Chinese family with multiple independent and overlapping phenotypes. In condition, molecular level analysis was efficient to identify the causative variant p.V4907D in GPR98 and p.V185M in EDNRB, also was helpful to confirm the clinical diagnosis of USH2 and WS4. Copyright © 2017 Elsevier B.V. All rights reserved.

  19. The ties that bind - A case report about restraining a mentally unwell family member at home for over a decade.

    Science.gov (United States)

    Tay, Jing Ling; Chan, Christopher Yi Wen; Ho, Zhen Chong; Lal, Manu

    2017-04-01

    This is a case report describing a patient, with schizophrenia, who was physically chained by her mother in their house for more a decade. Illness factors, family dynamics, stigma, lack of mental health literacy and cultural roles contributed to her chaining. To our knowledge, this is the first case report that examines the prolonged use of physical restraints by family members on a patient in a developed urban setting and that explores the cultural and ethical issues surrounding this phenomenon. We have concluded that there remains a need for a national level approach to increase mental health literacy, reduce stigma and promote existing psychiatric community health services in a culturally sensitive manner. Copyright © 2017 Elsevier B.V. All rights reserved.

  20. The importance of older family members in providing social resources and promoting cancer screening in families with a hereditary cancer syndrome.

    Science.gov (United States)

    Ashida, Sato; Hadley, Donald W; Goergen, Andrea F; Skapinsky, Kaley F; Devlin, Hillary C; Koehly, Laura M

    2011-12-01

    This study evaluates the role of older family members as providers of social resources within familial network systems affected by an inherited cancer susceptibility syndrome.  Respondents who previously participated in a study that involved genetic counseling and testing for Lynch syndrome and their family network members were invited to participate in a onetime telephone interview about family communication. A total of 206 respondents from 33 families identified 2,051 social relationships (dyads). Nineteen percent of the respondents and 25% of the network members were older (≥60 years). Younger respondents (≤59 years) were more likely to nominate older network members as providers of social resources than younger members: instrumental support (odds ratio [OR] = 1.68), emotional support (OR = 1.71), help in crisis situation (OR = 2.04), and dependability when needed (OR = 2.15). Compared with younger network members, older members were more likely to be listed as encouragers of colon cancer screening by both younger (OR = 3.40) and older respondents (OR = 1.90) independent of whether support exchange occurred in the relationship. Engaging older network members in health interventions to facilitate screening behaviors and emotional well-being of younger members within families affected by inherited conditions may be beneficial. Findings can be used to empower older individuals about their important social roles in enhancing the well-being of their family members and to inform younger individuals about their older relatives' resourcefulness to facilitate positive social interactions.

  1. Women service members, veterans, and their families: What we know now.

    Science.gov (United States)

    Mankowski, Mariann; Everett, Joyce E

    2016-12-01

    The purpose of this paper is to highlight what we know now about female service members, veterans, and their families. The experiences of U.S. female service members and veterans are more complex than previous eras and significant demographic changes have taken place. U.S. female veterans are more likely to be younger, come from ethnic and racial minority groups, have children, and combat exposure. U.S. female service members report high rates of sexual violence and they are more vulnerable to homelessness and unemployment when compared to previous female military cohorts. U.S. female service members and veterans are also at higher risk for significant mental and health issues. Children and adolescents of women service members and veterans may also carry a heavy burden as a result of lengthy deployments. A majority of female service members and veterans will utilize community based healthcare and social services, therefore, it is essential that all healthcare providers understand the unique needs of this cohort of women. Practice implications at the micro, mezzo, and macro levels are discussed. Qualitative and quantitative studies that expand our understanding of women's experience in the military and as veterans are encouraged. Copyright © 2016 Elsevier Ltd. All rights reserved.

  2. Knowledge and practice on prevention of diabetes mellitus among Diabetes mellitus family members, in suburban cities in Ethiopia.

    Science.gov (United States)

    Wolde, Mistire; Berhe, Nega; van Die, Irma; Medhin, Girmay; Tsegaye, Aster

    2017-11-02

    Diabetes mellitus (DM) is one of the serious non communicable diseases worldwide. Presence of DM patient in a family may be considered as risk factor for other family members to acquire the disease, due to DM inheritance nature and/or similar life style pattern among family members. This paper assessed awareness of DM patients' family members (DMPFMs) about DM occurrence and prevention. A cross sectional study was conducted in 2014 in two suburban cities of Ethiopia, namely Kemisse, and Kombolcha using an interviewer administered questionnaire among primary or secondary degree DMPFMs and controls. Based on eligibility criteria study participants were selected by health extension workers on house to house visit. Data were analyzed using SPSS version 20, and P value less than 0.05 considered as statistically significant. Of the total 347 study participants, 45.5% (n = 158) had DMPFMs. Majority, 60.8% of DMPFMs and 73.0% of controls were males. Mean age of DMPFMs (30.06 years) was less than that of the controls (37.38 years). On living style, 51.9% DMPFMs, and 42.8% of controls were single. In both study groups, the majority of study participants attended grade 7-12. The likelihood of having good level of knowledge among DMPFMs were 2.94 times (AOR = 2.94 95% CI 1.87-4.86) higher compared to those who did not. Those attaining higher educational levels were 3.41 times (AOR = 3.41, 95% CI 1.31-8.91) more likely to have good level of knowledge, as compared to those who were unable to read and write. The likelihood of having good level of positive practice among DMPFMs were 3.38 times (AOR = 3.38% CI 2.05-5.58) higher as compared to controls. Participants who were living in Kombolcha were 2.33 times (AOR = 2.33 95% CI 1.31-4.12) more likely to have good level of practice, as compared to individuals from Kemisse. Diabetes mellitus family members in the Ethiopian suburban cities Kemisse, and Kombolcha had better knowledge and practice about DM compared to

  3. 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.

  4. E2F family members are differentially regulated by reversible acetylation

    DEFF Research Database (Denmark)

    Marzio, G; Wagener, C; Gutierrez, M I

    2000-01-01

    of the other E2F family members. Here we report that E2F-1, -2, and -3, but not E2F-4, -5, and -6, associate with and are acetylated by p300 and cAMP-response element-binding protein acetyltransferases. Acetylation occurs at three conserved lysine residues located at the N-terminal boundary of their DNA......The six members of the E2F family of transcription factors play a key role in the control of cell cycle progression by regulating the expression of genes involved in DNA replication and cell proliferation. E2F-1, -2, and -3 belong to a structural and functional subfamily distinct from those...

  5. The role of interleukin-1 family members in the host defence against Aspergillus fumigatus.

    Science.gov (United States)

    Gresnigt, Mark S; van de Veerdonk, Frank L

    2014-12-01

    The interleukin (IL)-1 family consists of 11 members, which all play significant roles in regulating inflammatory responses in the host. IL-1α and IL-1β exert potent pro-inflammatory effects and are key players in the recruitment of neutrophils to the site of inflammation. Protective anti-Aspergillus host responses during the early stages of invasive aspergillosis are critically dependent on neutrophil recruitment, and several lines of evidence support that there is an important role for IL-1 in this process. However, IL-1-mediated inflammation needs to be tightly regulated, since uncontrolled inflammation can result in inflammatory pathology and thereby be detrimental for the host. Aspergillus-induced IL-1-mediated inflammation could therefore be amendable for IL-1 blockade under specific circumstances. This review describes the current understanding of the role of IL-1 family members in the host response against Aspergillus fumigatus and highlights the importance of balanced IL-1 responses in aspergillosis.

  6. Identification of the PDI-family member ERp90 as an interaction partner of ERFAD.

    Directory of Open Access Journals (Sweden)

    Jan Riemer

    Full Text Available In the endoplasmic reticulum (ER, members of the protein disulfide isomerase (PDI family perform critical functions during protein maturation. Herein, we identify the previously uncharacterized PDI-family member ERp90. In cultured human cells, we find ERp90 to be a soluble ER-luminal glycoprotein that comprises five potential thioredoxin (Trx-like domains. Mature ERp90 contains 10 cysteine residues, of which at least some form intramolecular disulfides. While none of the Trx domains contain a canonical Cys-Xaa-Xaa-Cys active-site motif, other conserved cysteines could endow the protein with redox activity. Importantly, we show that ERp90 co-immunoprecipitates with ERFAD, a flavoprotein involved in ER-associated degradation (ERAD, through what is most likely a direct interaction. We propose that the function of ERp90 is related to substrate recruitment or delivery to the ERAD retrotranslocation machinery by ERFAD.

  7. Expression of activator protein-1 (AP-1) family members in breast cancer

    International Nuclear Information System (INIS)

    Kharman-Biz, Amirhossein; Gao, Hui; Ghiasvand, Reza; Zhao, Chunyan; Zendehdel, Kazem; Dahlman-Wright, Karin

    2013-01-01

    The activator protein-1 (AP-1) transcription factor is believed to be important in tumorigenesis and altered AP-1 activity was associated with cell transformation. We aimed to assess the potential role of AP-1 family members as novel biomarkers in breast cancer. We studied the expression of AP-1 members at the mRNA level in 72 primary breast tumors and 37 adjacent non-tumor tissues and evaluated its correlation with clinicopathological parameters including estrogen receptor (ER), progesterone receptor (PR) and HER2/neu status. Expression levels of Ubiquitin C (UBC) were used for normalization. Protein expression of AP-1 members was assessed using Western blot analysis in a subset of tumors. We used student’s t-test, one-way ANOVA, logistic regression and Pearson’s correlation coefficient for statistical analyses. We found significant differences in the expression of AP-1 family members between tumor and adjacent non-tumor tissues for all AP-1 family members except Fos B. Fra-1, Fra-2, Jun-B and Jun-D mRNA levels were significantly higher in tumors compared to adjacent non-tumor tissues (p < 0.001), whilst c-Fos and c-Jun mRNA levels were significantly lower in tumors compared with adjacent non-tumor tissues (p < 0.001). In addition, Jun-B overexpression had outstanding discrimination ability to differentiate tumor tissues from adjacent non-tumor tissues as determined by ROC curve analysis. Moreover, Fra-1 was significantly overexpressed in the tumors biochemically classified as ERα negative (p = 0.012) and PR negative (p = 0.037). Interestingly, Fra-1 expression was significantly higher in triple-negative tumors compared with luminal carcinomas (p = 0.01). Expression levels of Fra-1 and Jun-B might be possible biomarkers for prognosis of breast cancer

  8. Al-Anon family groups' newcomers and members: Concerns about the drinkers in their lives.

    Science.gov (United States)

    Timko, Christine; Cronkite, Ruth; Laudet, Alexandre; Kaskutas, Lee Ann; Roth, Jeffrey; Moos, Rudolf H

    2014-01-01

    Despite Al-Anon's widespread availability and use, knowledge is lacking about the drinkers in attendees' lives. We filled this gap by describing and comparing Al-Anon newcomers' and members' reports about their "main drinker" (main person prompting initial attendance). Al-Anon's World Service Office mailed a random sample of groups, yielding completed surveys from newcomers (N = 362) and stable members (N = 265). Newcomers' and members' drinkers generally were comparable. They had known their drinker for an average of 22 years and been concerned about his or her's drinking for 9 years; about 50% had daily contact with the drinker. Most reported negative relationship aspects (drinker gets on your nerves; you disagree about important things). Newcomers had more concern about the drinker's alcohol use than members did, and were more likely to report their drinkers' driving under the influence. Drinkers' most frequent problem due to drinking was family arguments, and most common source of help was 12-step groups, with lower rates among drinkers of newcomers. Concerns spurring initial Al-Anon attendance were the drinker's poor quality of life, relationships, and psychological status; goals for initial attendance reflected these concerns. The drinker's alcohol use was of less concern in prompting initial Al-Anon attendance, and, accordingly, the drinker's reduced drinking was a less frequently endorsed goal of attendance. Family treatments for substance use problems might expand interventions and outcome domains beyond abstinence and relationship satisfaction to include the drinker's quality of life and psychological symptoms and in turn relieve concerns of family members. © American Academy of Addiction Psychiatry.

  9. A review of issues and concerns of family members of adult burn survivors.

    Science.gov (United States)

    Sundara, Diana C

    2011-01-01

    The purpose of this review is to synthesize what is known about the issues and concerns of families of adult burn survivors from research and clinical articles written between 1973 and 2009. Electronic database searching, ancestry searching, and electronic hand searching were performed to identify relevant articles. Seventeen research studies and 14 clinical articles were identified. Families are often in crisis immediately after the injury. This crisis involves strong emotions, some of which may persist over time. Throughout the course of hospitalization, family issues include worries about their loved one's physical appearance, logistical concerns, and the transition to home. For partners, role changes and sexual concerns may be of particular importance. Extended family, friends, the burn team, and other families affected by a burn injury are important sources of support for family members. Few studies have been conducted beyond the time of hospitalization. Clinical articles have identified issues not present in the research literature. Further research is needed that focuses more closely on families and their experiences both in and out of the hospital. Implications for burn care providers based on the findings of this review are discussed.

  10. 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.

  11. Niakha virus: A novel member of the family Rhabdoviridae isolated from phlebotomine sandflies in Senegal

    OpenAIRE

    Vasilakis, Nikos; Widen, Steven; Mayer, Sandra V.; Seymour, Robert; Wood, Thomas G.; Popov, Vsevolov; Guzman, Hilda; Travassos da Rosa, Amelia P.A.; Ghedin, Elodie; Holmes, Edward C.; Walker, Peter J.; Tesh, Robert B.

    2013-01-01

    Members of the family Rhabdoviridae have been assigned to eight genera but many remain unassigned. Rhabdoviruses have a remarkably diverse host range that includes terrestrial and marine animals, invertebrates and plants. Transmission of some rhabdoviruses often requires an arthropod vector, such as mosquitoes, midges, sandflies, ticks, aphids and leafhoppers, in which they replicate. Herein we characterize Niakha virus (NIAV), a previously uncharacterized rhabdovirus isolated from phebotomin...

  12. Expression of Hepatoma-derived growth factor family members in the adult central nervous system

    Directory of Open Access Journals (Sweden)

    Abouzied Mekky M

    2006-01-01

    Full Text Available Abstract Background Hepatoma-derived growth factor (HDGF belongs to a polypeptide family containing five additional members called HDGF related proteins 1–4 (HRP-1 to -4 and Lens epithelial derived growth factor. Whereas some family members such as HDGF and HRP-2 are expressed in a wide range of tissues, the expression of others is very restricted. HRP-1 and -4 are only expressed in testis, HRP-3 only in the nervous system. Here we investigated the expression of HDGF, HRP-2 and HRP-3 in the central nervous system of adult mice on the cellular level by immunohistochemistry. In addition we performed Western blot analysis of various brain regions as well as neuronal and glial cell cultures. Results HDGF was rather evenly expressed throughout all brain regions tested with the lowest expression in the substantia nigra. HRP-2 was strongly expressed in the thalamus, prefrontal and parietal cortex, neurohypophysis, and the cerebellum, HRP-3 in the bulbus olfactorius, piriform cortex and amygdala complex. HDGF and HRP-2 were found to be expressed by neurons, astrocytes and oligodendrocytes. In contrast, strong expression of HRP-3 in the adult nervous system is restricted to neurons, except for very weak expression in oligodendrocytes in the brain stem. Although the majority of neurons are HRP-3 positive, some like cerebellar granule cells are negative. Conclusion The coexpression of HDGF and HRP-2 in glia and neurons as well as the coexpression of all three proteins in many neurons suggests different functions of members of the HDGF protein family in cells of the central nervous system that might include proliferation as well as cell survival. In addition the restricted expression of HRP-3 point to a special function of this family member for neuronal cells.

  13. MicroRNA-125 family members exert a similar role in the regulation of murine hematopoiesis.

    Science.gov (United States)

    Wojtowicz, Edyta E; Walasek, Marta A; Broekhuis, Mathilde J C; Weersing, Ellen; Ritsema, Martha; Ausema, Albertina; Bystrykh, Leonid V; de Haan, Gerald

    2014-10-01

    MicroRNAs (miRNAs) are crucial for proper functioning of hematopoietic stem and progenitor cells (HSPCs). Members of the miRNA-125 family (consisting of miR-125a, miR-125b1, and miR-125b2) are known to confer a proliferative advantage on cells upon overexpression, to decrease the rate of apoptosis by targeting proapoptotic genes, and to promote differentiation toward the myeloid lineage in mice. However, many distinct biological effects of the three miR-125 species have been reported as well. In the current study, we set out to assess whether the three miRNA-125s that carry identical seed sequences could be functionally different. Our data show that overexpression of each of the three miR-125 family members preserves HSPCs in a primitive state in vitro, results in a competitive advantage upon serial transplantation, and promotes skewing toward the myeloid lineage. All miR-125 family members decreased the pool of phenotypically defined Lin(-)Sca(+)Kit(+)CD48(-)CD150(+) long-term hematopoietic stem cells, simultaneously increasing the self-renewal activity upon secondary transplantation. The downregulation of miR-125s in hematopoietic stem cells abolishes these effects and impairs long-term contribution to blood cell production. The introduction of a point mutation within the miRNA-125 seed sequence abolishes all abovementioned effects and leads to the restoration of normal hematopoiesis. Our results show that all miR-125 family members are similar in function, they likely operate in a seed-sequence-dependent manner, and they induce a highly comparable hematopoietic phenotype. Copyright © 2014 ISEH - International Society for Experimental Hematology. Published by Elsevier Inc. All rights reserved.

  14. The Unforgettables: a chorus for people with dementia with their family members and friends.

    Science.gov (United States)

    Mittelman, Mary Sherman; Papayannopoulou, Panayiota Maria

    2018-01-29

    Summary/Abstract Our experience evaluating a museum program for people with dementia together with their family members demonstrated benefits for all participants. We hypothesized that participation in a chorus would also have positive effects, giving them an opportunity to share a stimulating and social activity that could improve their quality of life. We inaugurated a chorus for people with dementia and their family caregivers in 2011, which rehearses and performs regularly. Each person with dementia must be accompanied by a friend or family member and must commit to attending all rehearsals and the concert that ensues. A pilot study included a structured assessment, take home questionnaires and focus groups. Analyses of pre-post scores were conducted; effect size was quantified using Cohen's d. Results showed that quality of life and communication with the other member of the dyad improved (Effect size: Cohen's d between 0.32 and 0.72) for people with dementia; quality of life, social support, communication and self-esteem improved (d between 0.29 and 0.68) for caregivers. Most participants stated that benefits included belonging to a group, having a normal activity together and learning new skills. Participants attended rehearsals in spite of harsh weather conditions. The chorus has been rehearsing and performing together for more than 6 years and contributing to its costs. Results of this pilot study suggest that people in the early to middle stage of dementia and their family members and friends can enjoy and learn from rehearsing and performing in concerts that also engage the wider community. It is essential to conduct additional larger studies of the benefits of participating in a chorus, which may include improved quality of life and social support for all, and reduced cognitive decline among people with dementia.

  15. Importance of dimer formation of myocardin family members in the regulation of their nuclear export.

    Science.gov (United States)

    Hayashi, Ken'ichiro; Morita, Tsuyoshi

    2013-01-01

    Myocardin (Mycd) family members function as a transcriptional cofactor for serum response factor (SRF). Dimer formation is necessary to exhibit their function, and the coiled-coil domain (CC) plays a critical role in their dimerization. We have recently revealed a detailed molecular mechanism for their Crm1 (exportin1)-mediated nuclear export. Here, we found other unique significances of the dimerization of Mycd family members. Introduction of mutations in the CC of myocardin-related transcription factor A (MRTF-A) and truncated Mycd resulted in significant decreases in their cytoplasmic localization and increases in their nuclear localization. In accordance with such subcellular localization changes, their binding to Crm1 were reduced. These results indicate that the dimerization of Mycd family members is necessary for their Crm1-mediated nuclear export. We have recently found that the N-terminal region of Mycd consisting of 128 amino acids (Mycd N128) self-associates to Mycd via the central basic domain (CB), resulting in masking the Crm1-binding site. Such self-association of MRTF-A would be unlikely. In this study, we also revealed that the dimerization of Mycd was also necessary for this self-association. Wild-type Mycd activated SRF-mediated transcription more potently than Mycd lacking the Mycd N128 (Mycd ΔN128) did. These results suggest two possible functions of the Mycd N128: 1) stabilization of Mycd dimer to enhance SRF-mediated transcription and 2) positive regulation of the transactivation ability of Mycd. These findings provide a new insight into the functional regulation of Mycd family members.

  16. The features of family relationship experience, style of parental bonding and relationship with family members of convicts

    Directory of Open Access Journals (Sweden)

    Daiva Karkockienė

    2016-01-01

    Full Text Available The aim of this article is to reveal the features of family relationship, style of parental bonding and relationship with family members of convicts. The tasks of the research: 1 to analyse the relationships experienced in families of convicts and the subjectively perceived style of parental bonding in their childhood; 2 to assess the relationships of convicts (men and women with their families; 3 to compare the attachment styles of convicts analysing different close relationships (with parents, relatives, partner or a close friend. The research was carried out in Panevėžys Correctional Facility and Lukiškės Remand Prison – Closed Prison. In total, the research involved 63 subjects, out of whom 33 were men and 30 women. The female subjects were 18–64 years old, males – 18–45 years old. The following tools were used: Parental Bonding Instrument (Parker G. et al., 1997, Familial Relationship Quality Measure (Ryan & Willits, 2007, Experiences in Close Relationships-Revised (ECR – RS; Fraley, Waller, & Brennan, 2000 and demographic questionnaire. The findings have showed that were no statistically significant differences with regard to gender were established assessing the subjectively perceived style of parental bonding, satisfaction with familial relationships and the attachment style in different close relationships. Both male and female subjects attributed the subjectively perceived upbringing style of a father to “overprotection”, that of a mother – to “care”. The attachment style of males characterised as “avoidance” is insignificantly higher than females, whereas the “anxiety” style of attachment in samples of males and females showed almost no differences. A positive relationship was established between the satisfaction with experienced familial relationships and the “caring” style of upbringing of both parents. Satisfaction with familial relationships positively correlates with the importance of

  17. Involvement of Family Members and Professionals in Older Women's Post-Fall Decision Making.

    Science.gov (United States)

    Bergeron, Caroline D; Hilfinger Messias, DeAnne K; Friedman, Daniela B; Spencer, S Melinda; Miller, Susan C

    2018-03-01

    This exploratory, descriptive study examined involvement of family members and professionals in older women's post-fall decision making. We conducted semistructured interviews with 17 older women who had recently fallen and 11 individuals these women identified as being engaged in their post-fall decision-making processes. Qualitative data analysis involved open and axial coding and development of themes. After experiencing a fall, these older women's openness to others' opinions and advice; their assessments of types and credibility of potential information sources; and the communication practices they established with these sources influenced how they accessed, accepted, or rejected information from family members and professionals. Increased awareness of the involvement of others in post-fall decision making could enhance communication with older women who fall. Developing and implementing practical strategies to help family members and professionals initiate and engage in conversations about falls and their consequences could lead to more open decision making and improved post-fall quality of life among older women.

  18. Evolutionary Pattern and Regulation Analysis to Support Why Diversity Functions Existed within PPAR Gene Family Members

    Directory of Open Access Journals (Sweden)

    Tianyu Zhou

    2015-01-01

    Full Text Available Peroxisome proliferators-activated receptor (PPAR gene family members exhibit distinct patterns of distribution in tissues and differ in functions. The purpose of this study is to investigate the evolutionary impacts on diversity functions of PPAR members and the regulatory differences on gene expression patterns. 63 homology sequences of PPAR genes from 31 species were collected and analyzed. The results showed that three isolated types of PPAR gene family may emerge from twice times of gene duplication events. The conserved domains of HOLI (ligand binding domain of hormone receptors domain and ZnF_C4 (C4 zinc finger in nuclear in hormone receptors are essential for keeping basic roles of PPAR gene family, and the variant domains of LCRs may be responsible for their divergence in functions. The positive selection sites in HOLI domain are benefit for PPARs to evolve towards diversity functions. The evolutionary variants in the promoter regions and 3′ UTR regions of PPARs result into differential transcription factors and miRNAs involved in regulating PPAR members, which may eventually affect their expressions and tissues distributions. These results indicate that gene duplication event, selection pressure on HOLI domain, and the variants on promoter and 3′ UTR are essential for PPARs evolution and diversity functions acquired.

  19. Evolutionary Pattern and Regulation Analysis to Support Why Diversity Functions Existed within PPAR Gene Family Members.

    Science.gov (United States)

    Zhou, Tianyu; Yan, Xiping; Wang, Guosong; Liu, Hehe; Gan, Xiang; Zhang, Tao; Wang, Jiwen; Li, Liang

    2015-01-01

    Peroxisome proliferators-activated receptor (PPAR) gene family members exhibit distinct patterns of distribution in tissues and differ in functions. The purpose of this study is to investigate the evolutionary impacts on diversity functions of PPAR members and the regulatory differences on gene expression patterns. 63 homology sequences of PPAR genes from 31 species were collected and analyzed. The results showed that three isolated types of PPAR gene family may emerge from twice times of gene duplication events. The conserved domains of HOLI (ligand binding domain of hormone receptors) domain and ZnF_C4 (C4 zinc finger in nuclear in hormone receptors) are essential for keeping basic roles of PPAR gene family, and the variant domains of LCRs may be responsible for their divergence in functions. The positive selection sites in HOLI domain are benefit for PPARs to evolve towards diversity functions. The evolutionary variants in the promoter regions and 3' UTR regions of PPARs result into differential transcription factors and miRNAs involved in regulating PPAR members, which may eventually affect their expressions and tissues distributions. These results indicate that gene duplication event, selection pressure on HOLI domain, and the variants on promoter and 3' UTR are essential for PPARs evolution and diversity functions acquired.

  20. Identification of a novel IL-1 cytokine family member in teleost fish.

    Science.gov (United States)

    Wang, Tiehui; Bird, Steve; Koussounadis, Antonis; Holland, Jason W; Carrington, Allison; Zou, Jun; Secombes, Christopher J

    2009-07-15

    A novel IL-1 family member (nIL-1F) has been discovered in fish, adding a further member to this cytokine family. The unique gene organization of nIL-1F, together with its location in the genome and low homology to known family members, suggests that this molecule is not homologous to known IL-1F. Nevertheless, it contains a predicted C-terminal beta-trefoil structure, an IL-1F signature region within the final exon, a potential IL-1 converting enzyme cut site, and its expression level is clearly increased following infection, or stimulation of macrophages with LPS or IL-1beta. A thrombin cut site is also present and may have functional relevance. The C-terminal recombinant protein antagonized the effects of rainbow trout rIL-1beta on inflammatory gene expression in a trout macrophage cell line, suggesting it is an IL-1beta antagonist. Modeling studies confirmed that nIL-1F has the potential to bind to the trout IL-1RI receptor protein, and may be a novel IL-1 receptor antagonist.

  1. Three members of the 6-cys protein family of Plasmodium play a role in gamete fertility.

    Directory of Open Access Journals (Sweden)

    Melissa R van Dijk

    2010-04-01

    Full Text Available The process of fertilization is critically dependent on the mutual recognition of gametes and in Plasmodium, the male gamete surface protein P48/45 is vital to this process. This protein belongs to a family of 10 structurally related proteins, the so called 6-cys family. To identify the role of additional members of this family in Plasmodium fertilisation, we performed genetic and functional analysis on the five members of the 6-cys family that are transcribed during the gametocyte stage of P. berghei. This analysis revealed that in addition to P48/45, two members (P230 and P47 also play an essential role in the process of parasite fertilization. Mating studies between parasites lacking P230, P48/45 or P47 demonstrate that P230, like P48/45, is a male fertility factor, consistent with the previous demonstration of a protein complex containing both P48/45 and P230. In contrast, disruption of P47 results in a strong reduction of female fertility, while males remain unaffected. Further analysis revealed that gametes of mutants lacking expression of p48/45 or p230 or p47 are unable to either recognise or attach to each other. Disruption of the paralog of p230, p230p, also specifically expressed in gametocytes, had no observable effect on fertilization. These results indicate that the P. berghei 6-cys family contains a number of proteins that are either male or female specific ligands that play an important role in gamete recognition and/or attachment. The implications of low levels of fertilisation that exist even in the absence of these proteins, indicating alternative pathways of fertilisation, as well as positive selection acting on these proteins, are discussed in the context of targeting these proteins as transmission blocking vaccine candidates.

  2. The effect of family member migration on education and work among nonmigrant youth in Mexico.

    Science.gov (United States)

    Halpern-Manners, Andrew

    2011-02-01

    While academic and policy circles have given much attention to the assimilatory experiences of Mexican immigrants in the United States, less is known about those who stay behind-an especially unfortunate oversight given the increasing number of Mexican youth with migrant family members. Of the studies on this topic, most have sought to identify the effect that migration has on youths' migratory and educational aspirations, often using qualitative methods in individual sending communities. The present article supplements this research in two ways: (1) in addition to assessing educational outcomes, the scope of the analysis is expanded to include nonmigrant' interaction with another homeland institution of upward mobility: the labor market; and (2) using a large demographic data set, statistical techniques are employed to adjust for unobserved selectivity into the migrant family-member population, thus accounting for a potentially serious source of bias. The results suggest that youth in migrant-sending families are less likely to complete the educational transitions leading up to postsecondary school and have a lower probability of participating in the local economy. The results also indicate that unobserved factors play a "nonignorable" role in sorting youth into migrant and nonmigrant families.

  3. Perspective of Family Members of Transitions to Alternative Levels of Care in Anglo-Saxon Countries.

    Science.gov (United States)

    Merla, C; Wickson-Griffiths, A; Kaasalainen, S; Dal Bello-Haas, V; Banfield, L; Hadjistavropoulos, T; Di Sante, E

    2018-01-01

    This scoping review explores circumstances surrounding the decision about, and eventual experience of, transitioning older adults into alternative levels of housing (ALH), such as long-term care. This topic is examined from a family member perspective, given their exposure and involvement in the care of older adult relatives during this transitional period. The scoping review methodology is based on the framework of Arksey and O'Malley and subsequent recommendations from Levac, Colquhoun, and O'Brien. Approximately 470 articles were reviewed covering the period between 2000 and November 2014; 37 articles met inclusion criteria. A temporal organization of themes was used to describe the experiences of family members in the pretransition, active transition, and posttransition periods of moving older adult relatives into ALH. This paper highlights the transitional period as a time of crisis, with a lack of planning, support, and transparent discussion. This study identifies a need for future research on the potential benefits of family support groups, interim transitional housing options, different models of ALH, changing roles in the posttransition period, and the need for a comprehensive list of housing options for older adults. Results have the potential to inform policy/practice and improve the lives of older adults and their family.

  4. Combined Occurrence of Autosomal Dominant Aniridia and Autosomal Recessive Albinism in Several Members of a Family.

    Science.gov (United States)

    Yahalom, Claudia; Sharon, Dror; Dalia, Eli; Simhon, Shiran Ben; Shemesh, Efrat; Blumenfeld, Anat

    2015-06-01

    To characterize clinical and genetic aspects of a family with a unique combination of two hereditary blinding eye diseases. Comprehensive eye examination of proband and family members. Molecular analyses of the TYR and PAX6 genes. A young couple, both legally blind, requested genetic counselling regarding their ocular condition. The female was previously diagnosed with oculocutaneous albinism (OCA1A) and her spouse was diagnosed with Peters anomaly. A comprehensive clinical examination revealed that the female had OCA1A combined with signs of another ocular disease, showing some similarity to aniridia. A complete ocular examination of her family members revealed that her brother also suffered from the same combined phenotype, her father had typical OCA1A signs, and her mother and sister had aniridia-like phenotype, without clinical diagnosis until the time of presentation. Molecular analysis identified two compound heterozygous TYR mutations known to cause OCAIA and cosegregate with oculocutaneous albinism. In addition, we identified a novel heterozygous PAX6 mutation confirming the atypical aniridia phenotype. We report here a unique and rare clinical phenotype that is explained by the segregation of two severe inherited eye diseases. The clinical and genetic analysis in this family allowed them to receive accurate genetic counseling.

  5. The family’s experience of having a mentally ill family member

    Directory of Open Access Journals (Sweden)

    Margaret Ngqoboka

    1998-11-01

    Full Text Available The purpose of this study was firstly to explore and describe the experience of families with a mentally ill family member and secondly to describe guidelines (based on the results obtained for the advanced psychiatric nurse practitioner to assist families in mobilising their resources to facilitate the promotion, maintenance and restoration of their mental health as an integral part of health. Opsomming Die doel van hierdie studie was eerstens om die belewenis van gesinne wat 'n geestesongestelde gesinslid het, te verken en beskryfen in die tweede piek om riglyne te beskryfvir die gevorderde psigiatriese verpleegpraktisyn om hierdie gesinne the help in die mobilise ring van hulpbronne om hul geestes gesondheid as integrate deel van gesondheid te bevorder, te handhaaf en te herstel. *Please note: This is a reduced version of the abstract. Please refer to PDF for full text.

  6. Caregiving to persons living with HIV/AIDS: experiences of Vietnamese family members.

    Science.gov (United States)

    Lundberg, Pranee C; Doan, Thoa Thi Kim; Dinh, Thu Thi Xuan; Oach, Nhung Kim; Le, Phong Hoang

    2016-03-01

    To examine the experiences of caregiving among Vietnamese family members of persons living with HIV/AIDS. As the number of persons living with HIV/AIDS increases, the need of family caregivers who can take responsibility for the home care of these persons increases. Vietnam has one of the fastest growing HIV epidemics in Asia. A descriptive cross-sectional study with quantitative and qualitative methods was used. A purposive sample of 104 family caregivers, both male and female, participated voluntarily by answering a questionnaire of caregiver burden, and 20 of them participated in in-depth interview. Female caregivers were mainly mothers and wives while male caregivers were mainly husbands, fathers and siblings. The largest group of family caregivers reported moderate to severe burden. There was no difference between genders in total caregiver burden, but there were several differences between older and younger caregivers in some items of caregiver burden. Five categories of experiences emerged: Different types of caregiving to persons living with HIV/AIDS, cultural and religious issues associated with caregiving, keeping secret to avoid stigma and discrimination, lack of knowledge about disease and provision of care, and fear, anxiety and frustration. Stigma and discrimination should be decreased by providing knowledge to the general public about HIV/AIDS, in particular about ways of transmission and protection. Special knowledge should be given to family caregivers to enable them to give care to persons living with HIV/AIDS at home. This could be done through culturally appropriate training/intervention programmes in which coping methods should be included. Support group interventions should also be carried through. The results obtained can be used as baseline information. Health care providers should consider gender, age and culture of family members of persons living with HIV/AIDS. Knowledge about HIV/AIDS, provision of care at home and in hospital, and

  7. Type II autosomal dominant osteopetrosis: radiological features in two families containing five members with asymptomatic and uncomplicated disease

    Energy Technology Data Exchange (ETDEWEB)

    Fotiadou, Anastasia; Kiriakou, Vera; Tsitouridis, Ioannis [Papageorgiou Hospital, Radiology Department, Thessaloniki (Greece); Arvaniti, Maria [Genimatas Hospital, Radiology Department, Thessaloniki (Greece)

    2009-10-15

    In this study we analysed the imaging patterns in two families containing five members with asymptomatic and uncomplicated autosomal dominant osteopetrosis (ADO II), and we report new and uncommon radiological manifestations. These findings might be useful in the context of reducing the incidence of fractures and other orthopaedic complications. Diffuse pelvic sclerosis on radiographs was observed incidentally in two patients. Both cases were asymptomatic, and the patients had never suffered a fracture. The suggestion of ADO II was raised. A detailed medical history, an imaging survey, and a haematological study were obtained so that other rare causes of osteosclerosis could be ruled out. No genetic study was conducted. All their first-degree relatives were also examined. Bony sclerosis was observed in five patients, and the radiological findings were analysed. A not previously reported thickening of the skull base without cranial nerve palsy or optic nerve atrophy was revealed in all patients. Scoliosis was present in three of them. This has been reported previously only once in ADO II. No lower limb deformity was detected. This study provided information on the pattern of radiological features in familial asymptomatic ADO II. These data on new and rare imaging findings will increase the diagnostic awareness of physicians and will guide a thorough investigation of the entire family. This might result in a consequent decrease in the incidence of fractures and other orthopaedic complications. (orig.)

  8. Type II autosomal dominant osteopetrosis: radiological features in two families containing five members with asymptomatic and uncomplicated disease

    International Nuclear Information System (INIS)

    Fotiadou, Anastasia; Kiriakou, Vera; Tsitouridis, Ioannis; Arvaniti, Maria

    2009-01-01

    In this study we analysed the imaging patterns in two families containing five members with asymptomatic and uncomplicated autosomal dominant osteopetrosis (ADO II), and we report new and uncommon radiological manifestations. These findings might be useful in the context of reducing the incidence of fractures and other orthopaedic complications. Diffuse pelvic sclerosis on radiographs was observed incidentally in two patients. Both cases were asymptomatic, and the patients had never suffered a fracture. The suggestion of ADO II was raised. A detailed medical history, an imaging survey, and a haematological study were obtained so that other rare causes of osteosclerosis could be ruled out. No genetic study was conducted. All their first-degree relatives were also examined. Bony sclerosis was observed in five patients, and the radiological findings were analysed. A not previously reported thickening of the skull base without cranial nerve palsy or optic nerve atrophy was revealed in all patients. Scoliosis was present in three of them. This has been reported previously only once in ADO II. No lower limb deformity was detected. This study provided information on the pattern of radiological features in familial asymptomatic ADO II. These data on new and rare imaging findings will increase the diagnostic awareness of physicians and will guide a thorough investigation of the entire family. This might result in a consequent decrease in the incidence of fractures and other orthopaedic complications. (orig.)

  9. Hemoglobin Q-Iran detected in family members from Northern Iran: a case report

    Directory of Open Access Journals (Sweden)

    Khorshidi Mohammad

    2012-02-01

    Full Text Available Abstract Introduction Hemoglobin Q-Iran (α75Asp→His is an important member of the hemoglobin Q family, molecularly characterized by the replacement of aspartic acid by histidine. The first report of hemoglobin Q-Iran and the nomenclature of this hemoglobinopathy dates back to 1970. Iran is known as a country with a high prevalence of α- and β-thalassemia and different types of hemoglobinopathy. Many of these variants are yet to be identified as the practice of molecular laboratory techniques is limited in this part of the world. Applying such molecular methods, we report the first hemoglobin Q-Iran cases in Northern Iran. Case presentation An unusual band was detected in an isoelectric focusing test and cellulose acetate electrophoresis of a sample from a 22-year-old Iranian man from Mazandaran Province. Capillary zone electrophoresis analysis identified this band as hemoglobin Q. A similar band was also detected in his mother's electrophoresis (38 years, Iranian ethnicity. The cases underwent molecular investigation and the presence of a hemoglobin Q-Iran mutation was confirmed by the amplification refractory mutation system polymerase chain reaction method. Direct conventional sequencing revealed a single guanine to cytosine missense mutation (c.226G > C; GAC >CAC at codon 75 in the α-globin gene in both cases. Conclusion The wide spectrum and high frequency of nondeletional α-globin mutations in Mazandaran Province is remarkable and seem to differ considerably from what has been found in Mediterranean populations. This short communication reports the first cases of patients with hemoglobin Q found in that region.

  10. 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.

  11. Magnitude of the smoking problem, knowledge, attitude and practice, among family members of primary school students

    Directory of Open Access Journals (Sweden)

    Babak Nakhostin-Roohi

    2013-06-01

    Full Text Available Background: smoking is a very important public health problem, urgently requiring immediate and effective measures due to its harmful effect on health. The purpose of this study was to collect baseline information about the magnitude of smoking problem, knowledge, attitude, and practice among family members of primary school students in the northwest region of Iran.Methods: of 55 680 primary school students (the 3th, 4th and 5th grades, 7.1% (n=3 954 were selected using randomized multi-stage cluster sampling. Data collection was conducted in April, May, and June 2011, by means of a self-administered two-page questionnaire.Results: a total of 3 954 students (57.6% boys and 42.3% girls with the mean age of 10.46±1.09 years were evaluated. According to our data, the prevalence of cigarette smoking among fathers was more than other family members (27.1% versus 17.8% whereas the prevalence of water pipe smoking among fathers and other family members was almost similar (9.2% and 9.7% respectively. None of the smoking type was prevalent among mothers (cigarette: 1% and water pipe: 1.1%. Considerable numbers of all students under study had been exposed to secondhand smoke at home (cigarette: 19.8% and water pipe: 7.7%.Conclusions: considering our findings, two procedures recommended to prevail the problem are to provide greater education about hazards of tobacco consumption among students and their family; and to legislate new laws by officials to ban tobacco use at home.

  12. Turnover of amyloid precursor protein family members determines their nuclear signaling capability.

    Science.gov (United States)

    Gersbacher, Manuel T; Goodger, Zoë V; Trutzel, Annette; Bundschuh, Diana; Nitsch, Roger M; Konietzko, Uwe

    2013-01-01

    The amyloid precursor protein (APP) as well as its homologues, APP-like protein 1 and 2 (APLP1 and APLP2), are cleaved by α-, β-, and γ-secretases, resulting in the release of their intracellular domains (ICDs). We have shown that the APP intracellular domain (AICD) is transported to the nucleus by Fe65 where they jointly bind the histone acetyltransferase Tip60 and localize to spherical nuclear complexes (AFT complexes), which are thought to be sites of transcription. We have now analyzed the subcellular localization and turnover of the APP family members. Similarly to AICD, the ICD of APLP2 localizes to spherical nuclear complexes together with Fe65 and Tip60. In contrast, the ICD of APLP1, despite binding to Fe65, does not translocate to the nucleus. In addition, APLP1 predominantly localizes to the plasma membrane, whereas APP and APLP2 are detected in vesicular structures. APLP1 also demonstrates a much slower turnover of the full-length protein compared to APP and APLP2. We further show that the ICDs of all APP family members are degraded by the proteasome and that the N-terminal amino acids of ICDs determine ICD degradation rate. Together, our results suggest that different nuclear signaling capabilities of APP family members are due to different rates of full-length protein processing and ICD proteasomal degradation. Our results provide evidence in support of a common nuclear signaling function for APP and APLP2 that is absent in APLP1, but suggest that APLP1 has a regulatory role in the nuclear translocation of APP family ICDs due to the sequestration of Fe65.

  13. Trichohepatoenteric Syndrome or Syndromic Diarrhea—Report of Three Members in a Family, First Report from Iran

    Directory of Open Access Journals (Sweden)

    F. E. Mahjoub

    2016-01-01

    Full Text Available Introduction. Intractable diarrhea of infancy (IDI includes several types of early onset diarrhea; one of the rare etiologies is trichohepatoenteric (THE syndrome, also known as syndromic diarrhea (SD which was primarily described by Stankler et al. Hereby we report a family with several affected members which to our knowledge is the first case report from Iran. Report of Cases. A three-year-old boy referred with short stature, poor weight gain, and intermittent steatotic diarrhea to our center. He was born to healthy, relative parents (cousins. He did not gain any weight after four months of age and began having intermittent steatotic diarrhea, abdominal distension, and fever. He was hospitalized several times. Two other children in the family also showed somewhat similar symptoms. Two sweat tests were negative for cystic fibrosis. Workup for Celiac disease was performed several times which was negative; however, gluten-free diet was tried several times which was not effective. Workup for Hirschsprung’s disease was performed but colon was ganglionic. Evidence of liver involvement was approved by elevated liver enzymes and coarse echo of liver on sonography. Discussion. Trichoenterohepatic syndrome should be put in mind in cases of intractable diarrhea presenting in a family with several affected members. Early diagnosis would save patients from unnecessary workups.

  14. Family functioning in the families of psychiatric patients: a comparison with nonclinical families.

    Science.gov (United States)

    Trangkasombat, Umaporn

    2006-11-01

    To examine family functioning in the families of psychiatric patients. Families of psychiatric patients and nonclinical families were compared. There were 60 families in each group. The instrument included a semistructured interview of family functioning and the Chulalongkorn Family Inventory (CFI), a self-report questionnaire designed to assess the perception of one's family. From the assessment by semistructured interview, 83.3% of psychiatric families and 45.0% of nonclinical families were found to be dysfunctional in at least one dimension. The difference was statistically significant (p dysfunctional dimensions in the psychiatric families was significantly higher than in the nonclinical control group, 3.5 +/- 1.9 and 0.98 +/- 1.5 respectively, p families were significantly lower than the control group, reflecting poor family functioning. The dysfunctions were mostly in the following dimensions: problem-solving, communication, affective responsiveness, affective involvement, and behavior control. Psychiatric families faced more psychosocial stressors and the average number of stressors was higher than the control families, 88.3% vs. 56.7% and 4.2 +/- 2.7 vs. 1.3 +/- 1.47 stressors respectively, p < 0.0001. Family functioning of psychiatric patients was less healthy than the nonclinical control. The present study underlined the significance of family assessment and family intervention in the comprehensive care of psychiatric patients.

  15. Incidence of Prevotella intermedia and Prevotella nigrescens Carriage among Family Members with Subclinical Periodontal Disease

    Science.gov (United States)

    Fukui, Katsuhito; Kato, Naoki; Kato, Haru; Watanabe, Kunitomo; Tatematsu, Norichika

    1999-01-01

    We established a typing system for Prevotella intermedia and Prevotella nigrescens using the combination of PCR ribotyping and arbitrarily primed PCR (AP-PCR) fingerprinting and applied this system to the study of intrafamilial incidence of these species in the oral cavity. PCR ribotyping followed by subtyping by AP-PCR fingerprinting was applied to each type strain of P. intermedia and P. nigrescens and 54 isolates (32 isolates of P. intermedia and 24 isolates of P. nigrescens) from extraoral infections, resulting in an excellent discriminatory power (discrimination index, 0.99) for both species. A total of 18 subjects from six families, with the subjects from each family comprising the mother, the father, and a child who had subclinical early-stage to moderate adult periodontitis or simple gingivitis and who carried P. intermedia or P. nigrescens, or both, were enrolled in the study of intrafamilial carriage. When 20 colonies per specimen of subgingival plaque, if available, were picked from primary culture, 115 P. intermedia and 178 P. nigrescens isolates were recovered from the 18 subjects. Among the subjects studied, family members shared the same subtype strain(s) but non-family members did not. Multiple subtypes were found in 8 (57%) of the 14 P. nigrescens-positive subjects but in only 3 (27%) of the 11 P. intermedia-positive subjects; the difference was, however, not statistically significant (P = 0.14). These results suggest that the combination of PCR ribotyping and AP-PCR fingerprinting is well suited for the epidemiological study of P. intermedia and P. nigrescens and that each family seems to carry a distinct subtype(s) of these species. PMID:10488167

  16. Functional analysis of the Escherichia coli genome for members of the alpha/beta hydrolase family.

    Science.gov (United States)

    Zhang, L; Godzik, A; Skolnick, J; Fetrow, J S

    1998-01-01

    Database-searching methods based on sequence similarity have become the most commonly used tools for characterizing newly sequenced proteins. Due to the often underestimated functional diversity in protein families and superfamilies, however, it is difficult to make the characterization specific and accurate. In this work, we have extended a method for active-site identification from predicted protein structures. The structural conservation and variation of the active sites of the alpha/beta hydrolases with known structures were studied. The similarities were incorporated into a three-dimensional motif that specifies essential requirements for the enzymatic functions. A threading algorithm was used to align 651 Escherichia coli open reading frames (ORFs) to one of the members of the alpha/beta hydrolase fold family. These ORFs were then screened according to our three-dimensional motif and with an extra requirement that demands conservation of the key active-site residues among the proteins that bear significant sequence similarity to the ORFs. 17 ORFs from E. coli were predicted to have hydrolase activity and their putative active-site residues were identified. Most were in agreement with the experiments and results of other database-searching methods. The study further suggests that YHET_ECOLI, a hypothetical protein classified as a member of the UPF0017 family (an uncharacterized protein family), bears all the hallmarks of the alpha/beta hydrolase family. The novel feature of our method is that it uses three-dimensional structural information for function prediction. The results demonstrate the importance and necessity of such a method to fill the gap between sequence alignment and function prediction; furthermore, the method provides a way to verify the structure predictions, which enables an expansion of the applicable scope of the threading algorithms.

  17. Marriage and family therapy faculty members' balance of work and personal life.

    Science.gov (United States)

    Matheson, Jennifer L; Rosen, Karen H

    2012-04-01

    A sense of imbalance is common among both professors and therapists, though few studies have been published examining the work and personal life balance of those who work in both professions simultaneously. Using in-depth telephone interviews, this study examined the work and personal life balance of 16 marriage and family therapy (MFT) faculty members. Results showed that six were satisfied with their balance, six were dissatisfied, and four were "middle of the road." Men, older participants, and those who were in their career longer were more likely to report feeling satisfied with their balance. Internal indicators of their balance included family and workplace messages, health indicators, feelings of contentment, and congruence with personal values. Child and relationship status, tenure status, and gender issues also impacted their sense of balance. Specific balance enhancers and reducers were highlighted, and participants discussed coping strategies and recommendations for other MFT faculty members. Clinical, training, and career implications are discussed. © 2010 American Association for Marriage and Family Therapy.

  18. 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.

  19. MicroRNA-99 family members suppress Homeobox A1 expression in epithelial cells.

    Directory of Open Access Journals (Sweden)

    Dan Chen

    Full Text Available The miR-99 family is one of the evolutionarily most ancient microRNA families, and it plays a critical role in developmental timing and the maintenance of tissue identity. Recent studies, including reports from our group, suggested that the miR-99 family regulates various physiological processes in adult tissues, such as dermal wound healing, and a number of disease processes, including cancer. By combining 5 independent genome-wide expression profiling experiments, we identified a panel of 266 unique transcripts that were down-regulated in epithelial cells transfected with miR-99 family members. A comprehensive bioinformatics analysis using 12 different sequence-based microRNA target prediction algorithms revealed that 81 out of these 266 down-regulated transcripts are potential direct targets for the miR-99 family. Confirmation experiments and functional analyses were performed to further assess 6 selected miR-99 target genes, including mammalian Target of rapamycin (mTOR, Homeobox A1 (HOXA1, CTD small phosphatase-like (CTDSPL, N-myristoyltransferase 1 (NMT1, Transmembrane protein 30A (TMEM30A, and SWI/SNF-related matrix-associated actin-dependent regulator of chromatin subfamily A member 5 (SMARCA5. HOXA1 is a known proto-oncogene, and it also plays an important role in embryonic development. The direct targeting of the miR-99 family to two candidate binding sequences located in the HOXA1 mRNA was confirmed using a luciferase reporter gene assay and a ribonucleoprotein-immunoprecipitation (RIP-IP assay. Ectopic transfection of miR-99 family reduced the expression of HOXA1, which, in consequence, down-regulated the expression of its downstream gene (i.e., Bcl-2 and led to reduced proliferation and cell migration, as well as enhanced apoptosis. In summary, we identified a number of high-confidence miR-99 family target genes, including proto-oncogene HOXA1, which may play an important role in regulating epithelial cell proliferation and

  20. MicroRNA-99 family members suppress Homeobox A1 expression in epithelial cells.

    Science.gov (United States)

    Chen, Dan; Chen, Zujian; Jin, Yi; Dragas, Dragan; Zhang, Leitao; Adjei, Barima S; Wang, Anxun; Dai, Yang; Zhou, Xiaofeng

    2013-01-01

    The miR-99 family is one of the evolutionarily most ancient microRNA families, and it plays a critical role in developmental timing and the maintenance of tissue identity. Recent studies, including reports from our group, suggested that the miR-99 family regulates various physiological processes in adult tissues, such as dermal wound healing, and a number of disease processes, including cancer. By combining 5 independent genome-wide expression profiling experiments, we identified a panel of 266 unique transcripts that were down-regulated in epithelial cells transfected with miR-99 family members. A comprehensive bioinformatics analysis using 12 different sequence-based microRNA target prediction algorithms revealed that 81 out of these 266 down-regulated transcripts are potential direct targets for the miR-99 family. Confirmation experiments and functional analyses were performed to further assess 6 selected miR-99 target genes, including mammalian Target of rapamycin (mTOR), Homeobox A1 (HOXA1), CTD small phosphatase-like (CTDSPL), N-myristoyltransferase 1 (NMT1), Transmembrane protein 30A (TMEM30A), and SWI/SNF-related matrix-associated actin-dependent regulator of chromatin subfamily A member 5 (SMARCA5). HOXA1 is a known proto-oncogene, and it also plays an important role in embryonic development. The direct targeting of the miR-99 family to two candidate binding sequences located in the HOXA1 mRNA was confirmed using a luciferase reporter gene assay and a ribonucleoprotein-immunoprecipitation (RIP-IP) assay. Ectopic transfection of miR-99 family reduced the expression of HOXA1, which, in consequence, down-regulated the expression of its downstream gene (i.e., Bcl-2) and led to reduced proliferation and cell migration, as well as enhanced apoptosis. In summary, we identified a number of high-confidence miR-99 family target genes, including proto-oncogene HOXA1, which may play an important role in regulating epithelial cell proliferation and migration during

  1. Narratives of family members on the suicide of older adults in an Amazonian metropolis

    Directory of Open Access Journals (Sweden)

    André Luis Sales da Costa

    2017-12-01

    Full Text Available ABSTRACT OBJECTIVE To analyze the narratives of family members on the suicide of older adults in Manaus, State of Amazonas, Brazil. METHODS This is a qualitative study of the narratives of eight older adults, who committed suicide in the period of 2001-2012. In the analytic-interpretative process, we have tried to perform the hermeneutic double exercise: to interpret the interpretation of narrators. We have used as theoretical references authors who have investigated suicide from the perspective of gender and its correlations with the sociofamiliar context and with mental disorders. RESULTS The family members would conceive the suicide of the older adults as related to losses, which would occur in a strained sociofamiliar scenario, leading to the appearance of psychopathological situations that, if not properly followed, would result in death. There would also be something inexorable in this sequence of events. The older adults, by the very time of their life, would tend to accumulate losses of different aspects in their trajectory. Their rigor and other relational limitations would simultaneously stress family relationships, favoring conflicts, and hinder adherence to treatment. This model of understanding, which has a wide support in the hegemonic medical-psychological discourse, in a sense minimizes possible self- or heteroaccusations directed at family members. CONCLUSIONS Special attention should be given to identify the older adults who present losses, family conflicts, and signs of psychopathology and who do not follow-up psychosocial care services. Strategies to help older adults handle family conflicts and losses, empowering them, should be developed and made available by intersectoral actions. The adequate treatment of psychopathological conditions should be implanted in a context in which active search mechanisms also existed for older adults who abandoned follow-up. The implementation of these actions is a challenge to be faced in

  2. "The stress will kill you": prisoner reentry as experienced by family members and the urgent need for support services.

    Science.gov (United States)

    Grieb, Suzanne M; Crawford, Amelia; Fields, Julie; Smith, Horace; Harris, Richard; Matson, Pamela

    2014-08-01

    The role of incarceration and community reentry after incarceration has been studied extensively for individual and community health; however, little attention has been given to the experiences of individuals who provide support to those in reentry. Through a community-academic partnership, seven focus groups were conducted with 39 individuals supporting a family member in reentry in the summer of 2012. The primary objectives of the focus groups were to explore community experiences and perspectives regarding providing support during a family member's reentry from a period of incarceration and any desired support for themselves during this time. Five themes emerged under a metatheme of stress, indicating that family members experience acute stress as a result of family reentry that adds to the chronic stress they already endure. Programs that acknowledge the difficult role of family members as supporters during an individual's reentry and provide support to them are desperately needed.

  3. The Importance of Older Family Members in Providing Social Resources and Promoting Cancer Screening in Families with a Hereditary Cancer Syndrome

    Science.gov (United States)

    Ashida, Sato; Hadley, Donald W.; Goergen, Andrea F.; Skapinsky, Kaley F.; Devlin, Hillary C.; Koehly, Laura M.

    2011-01-01

    Purpose: This study evaluates the role of older family members as providers of social resources within familial network systems affected by an inherited cancer susceptibility syndrome. Design and Methods: Respondents who previously participated in a study that involved genetic counseling and testing for Lynch syndrome and their family network…

  4. 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...

  5. Nuclear import mechanism for myocardin family members and their correlation with vascular smooth muscle cell phenotype.

    Science.gov (United States)

    Nakamura, Seiji; Hayashi, Ken'ichiro; Iwasaki, Kazuhiro; Fujioka, Tomoaki; Egusa, Hiroshi; Yatani, Hirofumi; Sobue, Kenji

    2010-11-26

    Myocardin (Mycd), which is essential for the differentiation of the smooth muscle cell lineage, is constitutively located in the nucleus, although its family members, myocardin-related transcription factors A and B (MRTF-A/B), mostly reside in the cytoplasm and translocate to the nucleus in response to Rho signaling. The mechanism for their nuclear import is unclear. Here we investigated the mechanism for the nuclear import of Mycd family members and demonstrated any correlation between such mechanism and the phenotype of vascular smooth muscle cells (VSMCs). In cultured VSMCs, the knockdown of importin β1 inhibited the nuclear import of Mycd and MRTF-A/B. Their NH(2)-terminal basic domain was identified as a binding site for importin α/β1 by in vitro analyses. However, Mycd had a higher affinity for importin α/β1 than did MRTF-A/B, even in the absence of G-actin, and Mycd affinity for importin α1/β1 was stronger than for any other importin α/β1 heterodimers. The binding of Mycd to importin α/β1 was insensitive to G-actin, whereas that of MRTF-A/B was differently inhibited by G-actin. In dedifferentiated VSMCs, the levels of importins α1 and β1 were reduced concomitant with down-regulation of Mycd, serum response factor, and smooth muscle cell markers. By contrast, in differentiated VSMCs, their expressions were up-regulated. Thus, the nuclear import of Mycd family members in VSMCs depends on importin α/β1, and their relative affinities for importin α/β1 heterodimers determine Mycd nuclear import. The expression of Mycd nuclear import machineries is related to the expression levels of VSMC phenotype-dependent smooth muscle cell markers.

  6. 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

  7. Common mental disorders among adult members of 'left-behind' international migrant worker families in Sri Lanka.

    Science.gov (United States)

    Siriwardhana, Chesmal; Wickramage, Kolitha; Siribaddana, Sisira; Vidanapathirana, Puwalani; Jayasekara, Buddhini; Weerawarna, Sulochana; Pannala, Gayani; Adikari, Anushka; Jayaweera, Kaushalya; Pieris, Sharika; Sumathipala, Athula

    2015-03-28

    Nearly one-in-ten Sri Lankans are employed abroad as International migrant workers (IMW). Very little is known about the mental health of adult members in families left-behind. This study aimed to explore the impact of economic migration on mental health (common mental disorders) of left-behind families in Sri Lanka. A cross-sectional survey using multistage sampling was conducted in six districts (representing 62% of outbound IMW population) of Sri Lanka. Spouses and non-spouse caregivers (those providing substantial care for children) from families of economic migrants were recruited. Adult mental health was measured using the Patient Health Questionnaire. Demographic, socio-economic, migration-specific and health utilization information were gathered. A total of 410 IMW families were recruited (response rate: 95.1%). Both spouse and a non-spouse caregiver were recruited for 55 families with a total of 277 spouses and 188 caregivers included. Poor general health, current diagnosed illness and healthcare visit frequency was higher in the non-spouse caregiver group. Overall prevalence of common mental disorder (CMD; Depression, somatoform disorder, anxiety) was 20.7% (95%CI 16.9-24.3) with 14.4% (95%CI 10.3-18.6) among spouses and 29.8% (95%CI 23.2-36.4) among non-spouse caregivers. Prevalence of depression (25.5%; 95%CI 19.2-31.8) and somatoform disorder 11.7% (95%CI 7.0-16.3) was higher in non-spouse caregiver group. When adjusted for age and gender, non-returning IMW in family, primary education and low in-bound remittance frequency was associated with CMD for spouses while no education, poor general health and increased healthcare visits was significantly associated in the non-spouse caregiver group. To our knowledge, this is one of the first studies to explore specific mental health outcomes among adult left-behind family members of IMW through standardized diagnostic instruments in Sri Lanka and in South Asian region. Negative impact of economic migration is

  8. Unusual clinical presentation of sporotrichosis in three members of one family.

    Science.gov (United States)

    Falqueto, Aloisio; Bravim Maifrede, Simone; Araujo Ribeiro, Mariceli

    2012-04-01

    Sporotrichosis is a mycosis caused by the dimorphic fungus Sporothrix spp., and the primary mode of transmission is traumatic inoculation of fungus conidia from plants and other organic matter. Sporotrichosis was established in a cat and in three members of one family from a rural area, by fungal growth in culture. The cutaneous lesions developed on the lower buttock and limbs with no report of any injury. Although sporotrichosis should be considered for differential diagnosis in people working with soil and plants, cases of chronic lesions on skin of cats and in households is probably a new epidemiological approach in a given geographic region. © 2012 The International Society of Dermatology.

  9. Members of the heat-shock protein 70 family promote cancer cell growth by distinct mechanisms

    DEFF Research Database (Denmark)

    Rohde, Mikkel; Daugaard, Mads; Jensen, Mette Hartvig

    2005-01-01

    Whereas the stress-inducible heat-shock protein 70 (Hsp70) has gained plenty of attention as a putative target for tumor therapy, little is known about the role of other Hsp70 proteins in cancer. Here we present the first thorough analysis of the expression and function of the cytosolic Hsp70...... proteins in human cancer cells and identify Hsp70-2, a protein essential for spermatogenesis, as an important regulator of cancer cell growth. Targeted knock-down of the individual family members by RNA interference revealed that both Hsp70 and Hsp70-2 were required for cancer cell growth, whereas...

  10. Differential expression of members of the E2F family of transcription factors in rodent testes

    Directory of Open Access Journals (Sweden)

    Toppari Jorma

    2006-12-01

    Full Text Available Abstract Background The E2F family of transcription factors is required for the activation or repression of differentially expressed gene programs during the cell cycle in normal and abnormal development of tissues. We previously determined that members of the retinoblastoma protein family that interacts with the E2F family are differentially expressed and localized in almost all the different cell types and tissues of the testis and in response to known endocrine disruptors. In this study, the cell-specific and stage-specific expression of members of the E2F proteins has been elucidated. Methods We used immunohistochemical (IHC analysis of tissue sections and Western blot analysis of proteins, from whole testis and microdissected stages of seminiferous tubules to study the differential expression of the E2F proteins. Results For most of the five E2F family members studied, the localizations appear conserved in the two most commonly studied rodent models, mice and rats, with some notable differences. Comparisons between wild type and E2F-1 knockout mice revealed that the level of E2F-1 protein is stage-specific and most abundant in leptotene to early pachytene spermatocytes of stages IX to XI of mouse while strong staining of E2F-1 in some cells close to the basal lamina of rat tubules suggest that it may also be expressed in undifferentiated spermatogonia. The age-dependent development of a Sertoli-cell-only phenotype in seminiferous tubules of E2F-1 knockout males corroborates this, and indicates that E2F-1 is required for spermatogonial stem cell renewal. Interestingly, E2F-3 appears in both terminally differentiated Sertoli cells, as well as spermatogonial cells in the differentiative pathway, while the remaining member of the activating E2Fs, E2F-2 is most concentrated in spermatocytes of mid to late prophase of meiosis. Comparisons between wildtype and E2F-4 knockout mice demonstrated that the level of E2F-4 protein displays a distinct

  11. Genomic sequence and organization of two members of a human lectin gene family

    International Nuclear Information System (INIS)

    Gitt, M.A.; Barondes, S.H.

    1991-01-01

    The authors have isolated and sequenced the genomic DNA encoding a human dimeric soluble lactose-binding lectin. The gene has four exons, and its upstream region contains sequences that suggest control by glucocorticoids, heat (environmental) shock, metals, and other factors. They have also isolated and sequenced three exons of the gene encoding another human putative lectin, the existence of which was first indicated by isolation of its cDNA. Comparisons suggest a general pattern of genomic organization of members of this lectin gene family

  12. Niakha virus: a novel member of the family Rhabdoviridae isolated from phlebotomine sandflies in Senegal.

    Science.gov (United States)

    Vasilakis, Nikos; Widen, Steven; Mayer, Sandra V; Seymour, Robert; Wood, Thomas G; Popov, Vsevolov; Guzman, Hilda; Travassos da Rosa, Amelia P A; Ghedin, Elodie; Holmes, Edward C; Walker, Peter J; Tesh, Robert B

    2013-09-01

    Members of the family Rhabdoviridae have been assigned to eight genera but many remain unassigned. Rhabdoviruses have a remarkably diverse host range that includes terrestrial and marine animals, invertebrates and plants. Transmission of some rhabdoviruses often requires an arthropod vector, such as mosquitoes, midges, sandflies, ticks, aphids and leafhoppers, in which they replicate. Herein we characterize Niakha virus (NIAV), a previously uncharacterized rhabdovirus isolated from phebotomine sandflies in Senegal. Analysis of the 11,124 nt genome sequence indicates that it encodes the five common rhabdovirus proteins with alternative ORFs in the M, G and L genes. Phylogenetic analysis of the L protein indicate that NIAV's closest relative is Oak Vale rhabdovirus, although in this analysis NIAV is still so phylogenetically distinct that it might be classified as distinct from the eight currently recognized Rhabdoviridae genera. This observation highlights the vast, and yet not fully recognized diversity, of this family. Copyright © 2013 Elsevier Inc. All rights reserved.

  13. Niakha virus: A novel member of the family Rhabdoviridae isolated from phlebotomine sandflies in Senegal

    Science.gov (United States)

    Vasilakis, Nikos; Widen, Steven; Mayer, Sandra V.; Seymour, Robert; Wood, Thomas G.; Popov, Vsevolov; Guzman, Hilda; da Rosa, Amelia P.A. Travassos; Ghedin, Elodie; Holmes, Edward C.; Walker, Peter J.; Tesh, Robert B.

    2013-01-01

    Members of the family Rhabdoviridae have been assigned to eight genera but many remain unassigned. Rhabdoviruses have a remarkably diverse host range that includes terrestrial and marine animals, invertebrates and plants. Transmission of some rhabdoviruses often requires an arthropod vector, such as mosquitoes, midges, sandflies, ticks, aphids and leafhoppers, in which they replicate. Herein we characterize Niakha virus (NIAV), a previously uncharacterized rhabdovirus isolated from phebotomine sandflies in Senegal. Analysis of the 11,124 nt genome sequence indicates that it encodes the five common rhabdovirus proteins with alternative ORFs in the M, G and L genes. Phylogenetic analysis of the L protein indicate that NIAV’s closest relative is Oak Vale rhabdovirus, although in this analysis NIAV is still so phylogenetically distinct that it might be classified as distinct from the eight currently recognized Rhabdoviridae genera. This observation highlights the vast, and yet not fully recognized diversity, of this family. PMID:23773405

  14. 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.

  15. A possibility for strengthening family life and health: Family members' lived experience when a sick child receives home care in Sweden.

    Science.gov (United States)

    Castor, Charlotte; Landgren, Kajsa; Hansson, Helena; Kristensson Hallström, Inger

    2018-03-01

    Families often prefer home care to hospital care, and home-care services for ill children are increasing worldwide with limited knowledge of families' needs during curative and palliative home care. The aim of this study was to elucidate family members' lived experience when a sick child received home care from county-based primary healthcare services. A descriptive qualitative design was chosen and 12 families including sick children receiving home care and their mothers, fathers and siblings in the south of Sweden were interviewed between December 2015 and January 2017. The transcribed interviews were analysed using a hermeneutic phenomenological approach. The family members' lived experience was described in three essential themes: "Strengthening family life" relates to how home care induced freedom and luxury in a strained period of life and supported the families' everyday life. Usual social activities and relations were maintained as time and energy was saved when receiving home care. "Promoting health" relates to how the family members' burden of illness decreased as the child's signs of illness alleviated and the well-being of the whole family increased when the child received care in the home. This provided a peaceful respite for family members' psychosocial recovery. The third theme, "Creating alliances," relates to the importance of creating trustful alliances for communicating participation in care. If trustful alliances were not created, parents felt an overwhelming responsibility and family members became anxious. The findings suggest that care in the family's home is a useful complement to hospital care. Home care should be given with close attention to family members' needs and conditions, as positive effects of home care might be jeopardised when expectations and possibilities are not successfully shared. © 2017 The Authors. Health and Social Care in the Community Published by John Wiley & Sons Ltd.