scholarly journals Patient and Family Participation in Clinical Guidelines Development: The Cystic Fibrosis Foundation Experience

10.2196/17875 ◽  
2020 ◽  
Vol 12 (3) ◽  
pp. e17875
Author(s):  
Sarah E Hempstead ◽  
Kelsey Fredkin ◽  
Cade Hovater ◽  
Edward T Naureckas
Keyword(s):  
Cystic Fibrosis ◽  
Family Member ◽  
Clinical Guidelines ◽  
Guideline Development ◽  
Family Members ◽  
Family Participation ◽  
Cystic Fibrosis Foundation ◽  
Guidelines Development ◽  
Recent Patient ◽  
Over Time

Patient and family participation in guideline development is neither standardized nor uniformly accepted in the guideline development community, despite the 2011 Institute of Medicine’s Guidelines We Can Trust and the Guideline International Network’s GIN-Public Toolkit recommendations. The Cystic Fibrosis Foundation has included patients and/or family members directly in guideline development since 2004. Over time, various strategies for increasing patient and family member participation have been implemented. Surveys of recent patient/family and clinical guidelines committee members have shown that inclusion of individuals with cystic fibrosis and their family members on guidelines committees has provided insight otherwise invisible to clinicians.

scholarly journals Patient and Family Participation in Clinical Guidelines Development: The Cystic Fibrosis Foundation Experience (Preprint)

2020 ◽  
Author(s):  
Sarah E Hempstead ◽  
Kelsey Fredkin ◽  
Cade Hovater ◽  
Edward T Naureckas
Keyword(s):  
Cystic Fibrosis ◽  
Family Member ◽  
Clinical Guidelines ◽  
Guideline Development ◽  
Family Members ◽  
Family Participation ◽  
Cystic Fibrosis Foundation ◽  
Guidelines Development ◽  
Recent Patient ◽  
Over Time

UNSTRUCTURED Patient and family participation in guideline development is neither standardized nor uniformly accepted in the guideline development community, despite the 2011 Institute of Medicine’s Guidelines We Can Trust and the Guideline International Network’s GIN-Public Toolkit recommendations. The Cystic Fibrosis Foundation has included patients and/or family members directly in guideline development since 2004. Over time, various strategies for increasing patient and family member participation have been implemented. Surveys of recent patient/family and clinical guidelines committee members have shown that inclusion of individuals with cystic fibrosis and their family members on guidelines committees has provided insight otherwise invisible to clinicians.

Family health evaluated by family members of older patients and nurses in emergency departments

2017 ◽  
Vol 38 (1) ◽  
pp. 38-47
Author(s):  
Jekaterina Demidenko ◽  
Pirkko Routasalo ◽  
Mika Helminen ◽  
Päivi Åstedt-Kurki ◽  
Eija Paavilainen ◽  
...  
Keyword(s):  
Emergency Department ◽  
Family Member ◽  
Emergency Departments ◽  
Older Patients ◽  
Family Members ◽  
Family Health ◽  
Moderate Level ◽  
The Family ◽  
Health Related ◽  
Over Time

Older patients quite often arrive in an emergency department (ED) with a family member, but little is known about the family member’s health evaluated in ED. The aim of this study was to describe family health in EDs evaluated by family members and nurses. Data were collected from Estonian hospital EDs from 111 family members of older patients and from 93 nurses. Family health in EDs was evaluated as being at a moderate level. Family members reported that family health was better when older patients lived with the family. The more time the family spent in the ED, the worse the health-related activities were. Nurses reported that cardiovascular problems in older patients who presented in EDs disturbed the values of family health. We conclude that ED nurses should recognize the level of family health, in order to ensure that the family will be able to cope at home. Family health in EDs should be reviewed over time to help nurses meet the required needs of the family.

scholarly journals In My Enemy’s House by C. Matas

2016 ◽  
Vol 6 (2) ◽  
Author(s):  
Jadis BCR
Keyword(s):  
Family Member ◽  
Family Members ◽  
World War ◽  
World War 2 ◽  
Non Fiction ◽  
Interesting Story ◽  
Horror Fiction ◽  
One Year ◽  
Over Time

Matas, Carol. In My Enemy’s House. Toronto: Scholastic Canada, 2013. Print. The book is about a Jewish Polish girl named Marisa who is trying to survive in World War 2 while over the years losing family members. First her papa then her sisters over time her little brother and mama eventually she travels to Weimar a town in Germany while the only family member she has left is sent off to be a slave she spends a few years in Germany, one year being a Polish slave and being abused and yelled at by her owner until eventually she goes back to Weimar and asks if she can go to a different family. She moves in with a family the father named Herr Reymann and the wife named Frau Reymann with three children named Charlotte, Hans and Monte. She spends a few years there everyone soon treating her like family after a while  she moves back to her hometown in hopes of finding any family left. What I liked about the book: very interesting story thrilling suspenseful and overall fantastic. What I didn't like about the book: nothing really except at times it can be kinda violent. I rate the book as a 4.Recommended: 4 out of 5 stars Reviewer: JadisMy name is Jadis. I like horror, fiction, non-fiction I don’t mind they’re all awesome!! Especially Goosebumps. Fantastic stories the thrill is amazing the chills are exciting. I love to read because it gives you a chance to escape into another world. Amazing stories, hilarious adventures all super inspiring.

FAKTOR – FAKTOR YANG BERHUBUNGAN DENGAN KEJADIAN PNEUMONIA PADA BALITA DI WILAYAH KERJA PUSKESMAS WONOREJO SAMARINDA TAHUN 2017

2018 ◽  
Vol 3 (2) ◽  
pp. 76
Author(s):  
Novi Anggun Pusvitasary
Keyword(s):  
Environmental Factors ◽  
Family Member ◽  
Cause Of Death ◽  
Family Members ◽  
Smoking Behavior ◽  
Smoking Habits ◽  
P Value ◽  
Behavioral Factors ◽  
The World ◽  
Health Standards

Pneumonia disease is the leading cause of death of babies in the world. The prevalence of pneumonia in infants is 18.5 / mil. Data from Samarinda City Health Office during the last 1 year there are 91 cases of pneumonia in Karang Anyar Village and 63 cases in Teluk Lerong Ulu Village. Factors causing pneumonia are toddler factors, behavioral factors, and environmental factors. The results show there is a relationship between house humidity (p value = 0,013; OR = 0,192), house dwelling density (p value = 0,024; OR = 0,214), and family member smoking behavior (p value = 0,006; OR = 10,450) with incidence of pneumonia in toddlers in the Working Area of Puskesmas Wonorejo Samarinda. There was no correlation between house temperature (p value = 0,214; OR = 0,337), house lighting (p value = 0,095; OR = 3,188) and family disease history (p value = 0,707; OR = 0,753) with Pneumonia occurrence in infant in region Work Puskesmas Wonorejo Samarinda. It was concluded that there was a relationship between house humidity, home dwelling density, and smoking behavior of family members with the incidence of pneumonia in infants. It is recommended to be able to apply housing health requirements that meet health standards to reduce the incidence of pneumonia in infants and change smoking habits.

Religion and Memory in Tacitus' Annals

2018 ◽  
Author(s):  
Kelly E. Shannon-Henderson
Keyword(s):  
Cultural Memory ◽  
Family Members ◽  
Religious Life ◽  
Memory Theory ◽  
State Changes ◽  
New Form ◽  
Religious Material ◽  
Over Time

This study demonstrates the importance of references to religious material in Tacitus’ Annals by analyzing them using cultural memory theory. Throughout his narrative of Julio-Claudian Rome in the Annals, Tacitus includes numerous references to the gods, fate, fortune, astrology, omens, temples, priests, emperor cult, and other religious material. Tacitus, who was not only a historian but also a member of Rome’s quindecimviral priesthood, shows a marked interest in even the most detailed rituals of Roman religious life. Yet his portrayal of religious material also suggests that the system is under threat with the advent of the principate. Traditional rituals are forgotten as the shape of the Roman state changes. Simultaneously, a new form of cultic commemoration develops as deceased emperors are deified and the living emperor and his family members are treated in increasingly worshipful ways by his subjects. The study traces the deployment of religious material throughout Tacitus’ narrative, to show how Tacitus views the development of this cultic ‘amnesia’ over time, from the reign of the cryptic, autocratic, and oddly mystical Tiberius, through Claudius’ failed attempts at reviving tradition, to the final sacrilegious disasters of the impious Nero.

scholarly journals Long-Term Effects of Abuse in Later Life Perpetrated by Family Members

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 444-445
Author(s):  
Naomi Meinertz ◽  
Pi-Ju Liu ◽  
Ron Acierno
Keyword(s):  
Social Support ◽  
Depressive Symptoms ◽  
Family Member ◽  
Older Adult ◽  
Family Members ◽  
Later Life ◽  
Adult Health ◽  
Long Term Effects ◽  
Long Term Impact

Abstract Abuse in later life could potentially lead to lower levels of social support, especially when perpetrated by family members who are charged with protecting the older adult in their care. Using both waves of the National Elder Mistreatment longitudinal data (wave one collected in 2008 and wave two in 2015; N=774), long-term effects of abuse (i.e., physical, emotional, sexual, and financial) on levels of social support, physical health, and clinical depressive symptoms for respondents at or above the age of 60 years were analyzed. A multivariate analysis of variance showed that respondents abused at wave one (n=261) by a family member (B=-0.55, p≤0.001), a spouse or ex-partner (B=-0.349, p=0.02), or a non-relative or stranger (B=-0.301, p=0.026) had lower levels of social support eight years later at wave two. Those abused by a family member at wave one also experienced higher levels of depressive symptoms at wave two (B=-0.187, p=0.01). Perpetrator type did not predict general health at wave two. These results emphasize the long-term impact of abuse on the lives of older adults and highlight the importance trusted relationships, such as with family members, have on older adult health and wellbeing.

scholarly journals Validation of the German version of the Family Reported Outcome Measure (FROM-16) to assess the impact of disease on the partner or family member

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Susanne A. Elsner ◽  
Sam S. Salek ◽  
Andrew Y. Finlay ◽  
Anna Hagemeier ◽  
Catherine J. Bottomley ◽  
...  
Keyword(s):  
Factor Analysis ◽  
Family Member ◽  
Internal Consistency ◽  
Outcome Measure ◽  
Test Validity ◽  
Family Members ◽  
German Version ◽  
The Family ◽  
The Difference ◽  
The Impact

Abstract Background The Family Reported Outcome Measure (FROM-16) assesses the impact of a patient’s chronic illness on the quality of life (QoL) of the patient’s partner or family members. The aim of the study was to translate, explore the structure of and validate the FROM-16. Methods The questionnaire was translated from English into German (forward, backward, four independent translators). Six interviews with family members were conducted to confirm the questionnaire for linguistic, conceptual, semantic and experiential equivalence and its practicability. The final German translation was tested for internal consistency, reproducibility and test validity. Criterion validity was tested by correlating the scores of the FROM-16 and the Global Health Scale (GHS). Principal component analysis, factor analysis, and confirmatory factor analysis was used to assess the questionnaire’s structure and its domains. Reliability and reproducibility were tested computing the intraclass correlation coefficient (ICC) using one sample t-test for testing the hypothesis that the difference between the scores was not different from zero. Results Overall, 83 family members (61% female, median age: 61 years) completed the questionnaire at two different times (mean interval: 22 days). Internal consistency was good for the FROM-16 scores (Cronbach’s α for total score = 0.86). In those with stable GHS, the ICC for the total score was 0.87 and the difference was not different from zero (p = 0.262) indicating reproducible results. A bi-factor model with a general factor including all items, and two sub-factors comprising the items from the original 2-factor construct had the best fit. Conclusions The German FROM-16 has good reliability, test validity and practicability. It can be considered as an appropriate and generic tool to measure QoL of a patient’s partner or family member. Due to the presence of several cross-loadings we do not recommend the reporting of the scores of the two domains proposed for the original version of FROM-16 when using the German version. Thus, in reporting the results emphasis should be put on the total score. Trial registration: Retrospectively registered: DRKS00021070.

scholarly journals Change in Pseudomonas aeruginosa prevalence in cystic fibrosis adults over time

2016 ◽  
Vol 16 (1) ◽  
Author(s):  
Mathew R. Crull ◽  
Kathleen J. Ramos ◽  
Ellen Caldwell ◽  
Nicole Mayer-Hamblett ◽  
Moira L. Aitken ◽  
...  
Keyword(s):  
Cystic Fibrosis ◽  
Pseudomonas Aeruginosa ◽  
Over Time

scholarly journals Natural history of glucose tolerance, beta-cell function and peripheral insulin sensitivity in cystic fibrosis patients with fasting euglycemia

2003 ◽  
Vol 149 (1) ◽  
pp. 53-59 ◽  
Author(s):  
F Lombardo ◽  
F De Luca ◽  
M Rosano ◽  
C Sferlazzas ◽  
C Lucanto ◽  
...  
Keyword(s):  
Cystic Fibrosis ◽  
Insulin Sensitivity ◽  
Natural History ◽  
Glucose Tolerance ◽  
Pancreatic Beta Cells ◽  
Cell Function ◽  
Glucose Levels ◽  
Peripheral Insulin Resistance ◽  
History Of ◽  
Over Time

OBJECTIVE: The loss of pancreatic beta-cells is thought to be one of the principal causes of diabetes mellitus (DM) in cystic fibrosis (CF), but the role of peripheral insulin resistance (IR) in the pathogenesis of DM in CF remains unclear. The aim of this study was to evaluate whether eventual changes of glucose tolerance (GT) over time were associated with modifications of insulin secretion or sensitivity. METHODS: Plasma glucose and insulin responses to an oral GT test (OGTT) were investigated and reinvestigated 13 Years later in 14 CF patients with initial and persistent fasting euglycemia and no history of insulin treatment. Insulin sensitivity (IS) at both tests was assessed on the basis of insulin and glucose levels both in the fasting state and during OGTTs. RESULTS: From the 1st to the 2nd OGTT: (a) the prevalence of DM responses significantly increased; (b) the areas beneath the respective glucose and insulin curves significantly increased and decreased respectively; (c) IR and IS indices decreased and increased respectively, even in the patients who developed DM; (d) pulmonary function significantly worsened in the entire series, especially in the patients who developed DM. CONCLUSIONS: (i) the natural history of glyco-metabolic status in CF is characterized by deteriorating GT over time; (ii) insulinopenia plays a prominent role in the pathogenesis of GT worsening; (iii) IR does not play any significant part in the pathogenesis of DM development; (iv) deterioration of lung function tests is more severe in the subjects who develop DM over time.

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