scholarly journals Family ENgagement in Intensive Care Environments (FENICE): A quasi-experimental study protocol

2020 ◽  
Vol 16 (3) ◽  
Author(s):  
Matteo Danielis ◽  
Alvisa Palese ◽  
Stefano Terzoni ◽  
Anne Destrebecq
Keyword(s):  
Quality Of Life ◽  
Intensive Care ◽  
Health Care Professionals ◽  
Family Engagement ◽  
Family Members ◽  
Well Being ◽  
Family Satisfaction ◽  
Active Involvement ◽  
Icu Discharge

Even if health care professionals should take into account the active involvement of families in Intensive Care Units (ICUs), little research that investigates family member’s contributions to care and includes its outcomes on both the family itself and the patient care, is available. The aim of this research project is to assess the effects of a family engagement program on family members’ satisfaction and on patients’ well-being and quality of life. A quasiexperimental study with two non-randomized groups (94 per each group) will be performed in two general ICUs of an Academic Italian Hospital. The intervention will be carried out in a single ICU and it consists of family members’ involvement in the care of their loved ones by means of bed physical exercises and simple care tasks. Participants will be evaluated through manifold outcomes: family satisfaction, assessed with the FS-ICU tool within 48 hours after ICU discharge; patients’ sense of well-being, measured with a visual analogue scale within 30 minutes after the time period of a visit; and the quality of life, investigated with the SF- 12 questionnaire within the first 48 hours after admission to ICU, at three and six months after ICU discharge by telephone. From July 2020, 188 subjects are going to be enrolled throughout the year. The latest data will be collected in December 2021 to allow the completion of the follow-ups of all participants. First, this study constitutes a significant step in a research agenda aimed at deepening the nursing sensitive outcomes in ICUs and the quality of hospital care. Secondly, the results of this study might have the potential to provide a better understanding of how families may modify patients’ outcomes and whether family members would benefit from an involvement program.

scholarly journals Families' perception, knowledge, and psychological stressors associated with transition of care from the intensive care unit

2019 ◽  
Vol 2 (1) ◽  
pp. 53-56
Author(s):  
Gustavo Ferrer ◽  
Chi Chan Lee ◽  
Monica Egozcue ◽  
Hector Vazquez ◽  
Melissa Elizee ◽  
...  
Keyword(s):  
Intensive Care Unit ◽  
Intensive Care ◽  
Health Care Providers ◽  
Family Members ◽  
Expected Improvement ◽  
Transition Of Care ◽  
Care Providers ◽  
Icu Discharge ◽  
Family Perceptions

Background: During the process of transition of care from the intensive care setting, clarity, and understanding are vital to a patient's outcome. A successful transition of care requires collaboration between health-care providers and the patient's family. The objective of this project was to assess the quality of continuity of care with regard to family perceptions, education provided, and psychological stress during the process. Methods: A prospective study conducted in a long-term acute care (LTAC) facility. On admission, family members of individuals admitted to the LTAC were asked to fill out a 15-item questionnaire with regard to their experiences from preceding intensive care unit (ICU) hospitalization. The setting was an LTAC facility. Patients were admitted to an LTAC after ICU admission. Results: Seventy-six participants completed the questionnaire: 38% expected a complete recovery, 61% expected improvement with disabilities, and 1.3% expected no recovery. With regard to the length of stay in the LTAC, 11% expected < 1 week, 26% expected 1 to 2 weeks, 21% expected 3 to 4 weeks, and 42% were not sure. Before ICU discharge, 33% of the participants expected the transfer to the LTAC. Also, 72% did not report a satisfactory level of knowledge regarding their family's clinical condition or medical services required; 21% did not receive help from family members; and 50% reported anxiety, 20% reported depression, and 29% reported insomnia. Conclusion: Families' perception of patients' prognosis and disposition can be different from what was communicated by the physician. Families' anxiety and emotional stress may precipitate this discrepancy. The establishment of optimal projects to eliminate communication barriers and educate family members will undoubtedly improve the quality of transition of care from the ICU.

scholarly journals From the First Visit On: Information Technology and Communication

2013 ◽  
Vol 9 (3) ◽  
pp. 152-154 ◽  
Author(s):  
J. Russell Hoverman
Keyword(s):  
Quality Of Life ◽  
Information Technology ◽  
Family Members ◽  
Well Being ◽  
Technology And Communication

The oncology community has found that communication is key to the patient's quality of life, the well-being of family members, hospice enrollment, and costs. The challenge is to make these conversations happen.

Evaluation of Alzheimer's Australia Vic Memory Lane Cafés

2010 ◽  
Vol 23 (2) ◽  
pp. 246-255 ◽  
Author(s):  
Briony Dow ◽  
Betty Haralambous ◽  
Courtney Hempton ◽  
Susan Hunt ◽  
Diane Calleja
Keyword(s):  
Quality Of Life ◽  
Support Groups ◽  
Social Inclusion ◽  
Service Providers ◽  
Family Members ◽  
Memory Loss ◽  
Well Being ◽  
Human Research Ethics ◽  
People With Dementia

ABSTRACTBackground: This paper describes the evaluation of the Memory Lane Café service in Victoria, Australia. The Alzheimer's Australia Vic Memory Lane Café model aims to provide a social and educational service to people living with dementia and their carers, family members or friends. Dementia is a serious health issue in Australia, with prevalence estimated at 6.5% of people over 65 years of age. Living with dementia has significant social and psychological ramifications, often negatively affecting quality of life. Social support groups can improve quality of life for people living with dementia.Methods: The evaluation included focus groups and surveys of people with dementia and their carers, staff consultation, service provider interviews, and researcher observation. The Melbourne Health Mental Health Human Research Ethics Committee approved the project. Participants included people with dementia (aged 60 to 93 years, previously enrolled in the Alzheimer's Australia Vic's six-week Living With Memory Loss Program), their carers, friends and/or family members, staff working in the Cafés, and service providers with links to the Cafés.Results: This evaluation found that Memory Lane Cafés promote social inclusion, prevent isolation, and improve the social and emotional well-being of attendees. However, Cafés did not meet the needs of all potential attendees.Conclusions: The evaluation recommended that existing Café services be continued and possibilities for extending the Cafés be explored. Based on evaluation outcomes, the Department of Health Victoria is funding four additional pilot programs in café style support services.

The Contribution of Hope to the Quality of Life among Aging African Americans: 1980–1992

2000 ◽  
Vol 50 (4) ◽  
pp. 279-295 ◽  
Author(s):  
Virgil H. Adams ◽  
James S. Jackson
Keyword(s):  
Quality Of Life ◽  
Life Satisfaction ◽  
African Americans ◽  
Well Being ◽  
Family Satisfaction ◽  
Hierarchical Regression ◽  
Personal Efficacy ◽  
Age Cohorts ◽  
Frequency Of Contact

This study examined age differences between 1979–80 and 1992 in the quality of life of African Americans using panel data from the National Survey of Black Americans. Of particular interest was the role of the hope dimension of personal efficacy in accounting for variance in general well-being, beyond that contributed by social demographic and economic indicators. Hierarchical regression analyses revealed that hope and family satisfaction in 1980 consistently accounted for significant amounts of variance in general life satisfaction in the 1992 fourth wave of data among all three cohorts. For older respondents, increased frequency of contact with friends and family help were the most important contributors to high satisfaction. Across waves in all age cohorts family satisfaction and contact with friends were most important in contributing to life satisfaction. Implications for further research on well-being among African Americans were discussed.

Amyotrophic Lateral Sclerosis

2018 ◽  
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Health Care Professionals ◽  
New Technologies ◽  
Neurodegenerative Disorder ◽  
Well Being ◽  
Psychological Well Being ◽  
The Impact ◽  
Lateral Sclerosis

Amyotrophic lateral sclerosis: Understanding and optimizing quality of life and psychological well-being presents a comprehensive and up-to-date review of the enhancement of the lives of people with amyotrophic lateral sclerosis (ALS) and their caregivers. ALS is a progressive, fatal neurodegenerative disorder. No current medical therapy can reverse or stop its progression, and the promotion of quality of life and psychological well-being is a central component of ALS care. Health care professionals who work in this field should incorporate attention to psychological, emotional, and relational aspects of the disease into their approach to care. This book provides some of the knowledge and direction necessary for optimizing the quality of care for individuals with ALS and their caregivers. Topics discussed include an ALS-centred view of quality of life, depressive features, anxiety, resilience, cognitive impairment, complementary and alternative medicines, and psychological research. Specific elements of ALS, such as end-of-life concerns and bulbar dysfunction, are described through the lens of their psychological impact. There is extensive discussion of the development of new psychological treatments, as well as the impact and incorporation of new technologies, with the goal of fostering optimal quality of life and psychological well-being as key parts of a holistic approach to care for the patients and for those who are close to such individuals.

More Than Just a Mammogram: Breast Cancer Screening Perspectives of Relatives of Women With Intellectual Disability

2014 ◽  
Vol 52 (6) ◽  
pp. 444-455 ◽  
Author(s):  
Nechama W. Greenwood ◽  
Deborah Dreyfus ◽  
Joanne Wilkinson
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Health Care ◽  
Intellectual Disability ◽  
Cancer Screening ◽  
Breast Cancer Screening ◽  
Breast Cancer Mortality ◽  
Family Members ◽  
Well Being

Abstract Women with intellectual disability (ID) have similar rates of breast cancer as the general public, but higher breast cancer mortality and lower rates of regular screening mammography. Screening rates are lowest among women who live with their families. Though women with ID often make decisions in partnership with their relatives, we lack research related to family member perspectives on mammography. We conducted a qualitative study of family members of women with ID, with an interview guide focused on health care decision making and experiences, and breast cancer screening barriers, facilitators, and beliefs as related to their loved ones. Sixteen family members underwent semistructured interviews. Important themes included mammography as a reference point for other social and cultural concerns, such as their loved one's sexuality or what it means to be an adult woman; fear of having to make hard decisions were cancer to be diagnosed acting as a barrier to screening; a focus on quality of life; and desire for quality health care for their loved one, though quality care did not always equate to regular cancer screening. Adults with ID are valued members of their families, and their relatives are invested in their well-being. However, families fear the potentially complicated decisions associated with a cancer diagnosis and may choose to forgo screening due to misinformation and a focus on quality of life. Effective interventions to address disparities in mammography should focus on adults with ID and their families together, and incorporate the family context.

scholarly journals Long-Term Outcomes in COVID-19 ICU Patients: A Prospective Cohort Study

2021 ◽  
Author(s):  
Nadine Van Veenendaal ◽  
Ingeborg Van der Meulen ◽  
Marisa Onrust ◽  
Wolter Paans ◽  
Willem Dieperink ◽  
...  
Keyword(s):  
Cohort Study ◽  
Intensive Care ◽  
Psychological Functioning ◽  
Employment Status ◽  
Family Members ◽  
Well Being ◽  
Long Term Outcomes ◽  
Icu Discharge

Abstract BACKGROUNDThe COVID-19 pandemic causes high rates of intensive care unit (ICU) admissions. After ICU-discharge patients and family members can suffer from persisting impairments known as ‘Post Intensive Care Syndrome’ (PICS) and PICS-family. Since COVID-19 is relatively new, there is barely any knowledge on the long-term outcomes of COVID-19 ICU-survivors and their family members.OBJECTIVESThis study aims to gain insight in the long-term physical, social and psychological functioning of COVID-19 ICU-survivors and their family members at three- and six-months following ICU discharge.METHODSA single-center, prospective cohort study was conducted in COVID-19 ICU-survivors and their family members. Enrolled participants received questionnaires at three and six months after ICU discharge. The MOS Short-Form General Health Survey, Clinical Frailty Scale, spirometry tests, McMaster Family Assessment Device (FAD-GF6+), the Hospital Anxiety and Depression Scale and return to work were used to evaluate physical, social and psychological functioning.RESULTSSixty COVID-19 ICU-survivors and 78 family members participated. Physical functioning was impaired in ICU-survivors as reflected by a score of 33.3 (IQR 16.7-66.7) and 50 (IQR 16.7-83.3) on the physical functioning subscale at 3- and 6-months follow-up respectively. Diffusion lung capacity was reduced in 69% of patients. Ninety percent of the ICU-survivors reported persistent symptoms after 6 months. Social functioning was impaired as 90% of the COVID-19 ICU-survivors did not reach their pre-ICU employment level, 6 months after ICU-discharge. Psychological functioning in ICU-survivors was normal. Family members experienced worse employment status in 35% and 34% including a decrease in employment rate of 18.3% and 7.4% at 3- and 6-months post ICU-discharge, respectively. Psychologically, 63% of the family members reported ongoing impaired well-being due to the COVID-19 related mandatory physical distance to their relatives.CONCLUSIONWe have shown that COVID-19 ICU-survivors suffer from a prolonged burden of disease, prominent in physical- and social functioning, worse employment status and persisting symptoms in 90%. In addition, family members also report long term effects expressed by a reduction in return to work and impaired well-being. Further research needs to extend the follow up and to study the effects of standardized rehabilitation in COVID-19 patients and their family members.

scholarly journals Virtual reality for relatives of ICU patients to improve psychological sequelae: study protocol for a multicentre, randomised controlled trial

BMJ Open ◽  
2021 ◽  
Vol 11 (9) ◽  
pp. e049704
Author(s):  
Johan H Vlake ◽  
Jasper van Bommel ◽  
Evert-Jan Wils ◽  
Tim Korevaar ◽  
Merel E Hellemons ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Virtual Reality ◽  
Intensive Care ◽  
Randomised Controlled Trial ◽  
Controlled Trial ◽  
Well Being ◽  
Control Group ◽  
Icu Patients ◽  
Randomised Controlled

IntroductionIntensive care unit (ICU) admission of a relative might lead to psychological distress and complicated grief (post-intensive care syndrome–family; PICS-F). Evidence suggests that increased distress during ICU stay increases risk of PICS-F, resulting in difficulty returning to their normal lives after the ICU experience. Effective interventions to improve PICS-F are currently lacking. In the present trial, we hypothesised that information provision using ICU-specific Virtual Reality for Family members/relatives (ICU-VR-F) may improve understanding of the ICU and subsequently improve psychological well-being and quality of life in relatives of patients admitted to the ICU.Methods and analysisThis multicentre, clustered randomised controlled trial will be conducted from January to December 2021 in the mixed medical-surgical ICUs of four hospitals in Rotterdam, the Netherlands. We aim to include adult relatives of 160 ICU patients with an expected ICU length of stay over 72 hours. Participants will be randomised clustered per patient in a 1:1 ratio to either the intervention or control group. Participants allocated to the intervention group will receive ICU-VR-F, an information video that can be watched in VR, while the control group will receive usual care. Initiation of ICU-VR-F will be during their hospital visit unless participants cannot visit the hospital due to COVID-19 regulations, then VR can be watched digitally at home. The primary objective is to study the effect of ICU-VR-F on psychological well-being and quality of life up to 6 months after the patients’ ICU discharge. The secondary outcome is the degree of understanding of ICU treatment and ICU modalities.Ethics and disseminationThe Medical Ethics Committee of the Erasmus Medical Centre, Rotterdam, the Netherlands, approved the study and local approval was obtained from each participating centre (NL73670.078.20). Our findings will be disseminated by presentation of the results at (inter)national conferences and publication in scientific, peer-reviewed journals.Trial registration numberNetherlands Trial Register (TrialRegister.nl, NL9220).

scholarly journals Impact on Mental, Physical and Cognitive functioning of a Critical care sTay during the COVID-19 pandemic (IMPACCT COVID-19): protocol for a prospective, multicentre, mixed-methods cohort study

BMJ Open ◽  
2021 ◽  
Vol 11 (9) ◽  
pp. e053610
Author(s):  
Ana Cristina Castro-Ávila ◽  
Catalina Merino-Osorio ◽  
Felipe González-Seguel ◽  
Agustín Camus-Molina ◽  
Jaime Leppe
Keyword(s):  
Quality Of Life ◽  
Intensive Care Unit ◽  
Cohort Study ◽  
Intensive Care ◽  
Cognitive Functioning ◽  
Healthcare Professionals ◽  
Cognitive Impairments ◽  
Anxiety And Depression ◽  
Icu Discharge

IntroductionThe ongoing pandemic could affect the duration, variety and severity of the mental, physical, and cognitive impairments intensive care unit (ICU) survivors and their families frequently present. We aim to determine the impact of the COVID-19 pandemic on the mental, physical, and cognitive health of survivors, the experience of their families and their treating healthcare professionals.Methods and analysisProspective, multicentre, mixed-methods cohort study in seven Chilean ICUs. Sample: 450 adults, able to walk independently prior to admission, in ICU and mechanical ventilation >48 hours with and without COVID-19. Clinical Frailty Scale, Charlson comorbidity index, mobility (Functional Status Score for the Status Score for the Intensive Care Unit) and muscle strength (Medical Research Council Sum Score) will be assessed at ICU discharge. Cognitive functioning (Montreal Cognitive Assessment–blind), anxiety and depression (Hospital Anxiety and Depression Scale), post-traumatic stress (Impact of Event Scale-Revised) symptoms, disability (WHO Disability Assessment Schedule 2.0), quality of life (European Quality of Life Health Questionnaire), employment and survival will be assessed at ICU discharge, 3 months and 6 months. A sample will be assessed using actigraphy and the Global Physical Activity Questionnaire at 6 months after ICU discharge. Trajectories of mental, physical, and cognitive impairments will be estimated using multilevel longitudinal modelling. A sensitivity analysis using multiple imputations will be performed to account for missing data and loss-to-follow-up. Survival will be analysed using Kaplan-Meier curves. The perceptions of family members regarding the ICU stay and the later recovery will be explored 3 months after discharge. Healthcare professionals will be invited to discuss the challenges faced during the pandemic using semistructured interviews. Interviews will be thematically analysed by two independent coders to identify the main themes of the experience of family members and healthcare professionals.Ethics and disseminationThe study was approved by the Clinica Alemana Universidad del Desarrollo Ethics Committee (2020–78) and each participating site. Study findings will be published in peer-reviewed journals and disseminated through social media and conference meetings.Trial registration numberNCT04979897.

scholarly journals The Quality of Life and Psychosocial Implications of Cancer-Related Lower-Extremity Lymphedema: A Systematic Review of the Literature

2020 ◽  
Vol 9 (10) ◽  
pp. 3200 ◽  
Author(s):  
Catharine Bowman ◽  
Katherine-Ann Piedalue ◽  
Mohamad Baydoun ◽  
Linda E. Carlson
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Lower Extremity ◽  
Health Care Professionals ◽  
Negative Relationship ◽  
Well Being ◽  
Observational Research ◽  
Cross Sectional ◽  
The Impact

Lower-extremity lymphedema (LEL) is a progressive, lifelong complication of cancer that places a substantial burden upon cancer survivors’ quality of life (QOL) and psychosocial well-being. Despite its prevalence, cancer-related LEL is inconsistently diagnosed, treated, and poorly recognized by health care professionals. The purpose of this systematic review was to summarize and appraise the quantitative literature evaluating the impact of cancer-related LEL on patients’ psychosocial well-being and QOL. Three databases (PubMed, PROQuest, and Scopus) were searched for observational research articles published before May 1st, 2020. Twenty-one articles were eligible (cross-sectional (n = 16), prospective cohort designs (n = 3), and retrospective cohort designs (n = 2)). The majority of studies reported a negative relationship between cancer-related LEL and global QOL and/or one or more psychosocial domains including (1) physical and functional; (2) psycho-emotional; (3) social, relational and financial. A greater number of LEL symptoms and higher LEL severity were associated with poorer QOL. Although the evidence to date suggests a negative relationship between cancer-related LEL and patients’ QOL and psychosocial well-being, there is a substantial need for longitudinal analyses to examine the directionality and temporality of this effect in order to inform cancer survivorship care modelling and improve patient outcomes after cancer.

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