Using Three Scenarios to Explain Life Expectancy in Advanced Cancer: Attitudes of Patients, Family Members, and Other Healthcare Professionals

2021 ◽  
Author(s):  
Sharon H. Nahm ◽  
Martin R. Stockler ◽  
Andrew J. Martin ◽  
Chris Brown ◽  
Peter Grimison ◽  
...  
Keyword(s):  
Life Expectancy ◽  
Advanced Cancer ◽  
Healthcare Professionals ◽  
Family Members

scholarly journals How Did Italian Adolescents with Disability and Parents Deal with the COVID-19 Emergency?

2021 ◽  
Vol 18 (4) ◽  
pp. 1687
Author(s):  
Silvia Faccioli ◽  
Francesco Lombardi ◽  
Pierantonio Bellini ◽  
Stefania Costi ◽  
Silvia Sassi ◽  
...  
Keyword(s):  
Assistive Technology ◽  
Healthcare Professionals ◽  
Family Members ◽  
Anxiety Symptoms ◽  
Rehabilitation Services ◽  
Disabled Children ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Positive Effects ◽  
Italian Adolescents

The COVID-19 emergency has imposed distanced education and has interrupted most rehabilitation services. Adolescents with disabilities have been isolated, and the burden on their families has been exacerbated. A cross-sectional survey was administered to adolescents with disability and to parents of disabled children to describe their experience during lockdown and their concerns or expectations about rehabilitation. A sample of 53 adolescents and 239 parents completed the survey. Adolescents were ages 13–18 years old (45.3% female). Most parents were between 35 and 55 years old (84.9% female). While 53.6% of the parents reported no positive effects of the lockdown, 92.5% of the adolescents expressed favorable consequences. The increased time spent with family members was judged positively by 27.2% of parents and by 64.2% of adolescents. Concern for their child’s disability was expressed by 47.3% of parents, while 73.6% of adolescents expressed concerns regarding the ban on meeting friends. In both groups, anxiety symptoms were correlated with the fear of contracting COVID-19 and with financial problems. Parents would have liked even more remote support from school and healthcare professionals, which was available for most participants. Thus, socioeconomic support, assistive technology and telerehabilitation strategies might help families with disabilities during a lockdown.

Effects of patient and personal demographic, clinical and psychosocial characteristics on the burden of family members caring for patients with advanced cancer in Greece

2015 ◽  
Vol 19 (1) ◽  
pp. 81-88 ◽  
Author(s):  
Ourania Govina ◽  
Grigorios Kotronoulas ◽  
Kyriaki Mystakidou ◽  
Stylianos Katsaragakis ◽  
Eugenia Vlachou ◽  
...  
Keyword(s):  
Advanced Cancer ◽  
Family Members ◽  
Psychosocial Characteristics

How long do I have? Observational study on communication about life expectancy with advanced cancer patients

2017 ◽  
Vol 100 (10) ◽  
pp. 1820-1827 ◽  
Author(s):  
I. Henselmans ◽  
E.M.A. Smets ◽  
P.K.J. Han ◽  
H.C.J.C. de Haes ◽  
H.W.M.van Laarhoven
Keyword(s):  
Life Expectancy ◽  
Observational Study ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Advanced Cancer Patients

Wernicke encephalopathy in a caregiver: A serious physical issue resulting from stress in a family member caring for an advanced cancer patient

2021 ◽  
pp. 1-3
Author(s):  
Mayumi Ishida ◽  
Nozomu Uchida ◽  
Akira Yoshioka ◽  
Izumi Sato ◽  
Tetsuya Hamaguchi ◽  
...  
Keyword(s):  
Cancer Patient ◽  
Family Member ◽  
Advanced Cancer ◽  
Family Members ◽  
The Body ◽  
Mental Condition ◽  
Wernicke Encephalopathy ◽  
Level Of Consciousness ◽  
Loss Of Appetite ◽  
Burden Of Caring

Abstract Objective It is well known that the burden on the families of cancer patient extends across many aspects, but there have been no reports of family members developing delirium due to the burden of caring for a cancer patient. Methods We reported a caregiver who developed Wernicke encephalopathy (WE) while caring for a family member with advanced cancer. Results The subject was a 71-year-old woman who had been caring for her husband, diagnosed with gastric cancer and liver metastases, for 5 months. She visited the “caregivers’ clinic” after referral by an oncologist who was worried about a deterioration in her mental condition that had appeared several weeks previously. The woman had a history of diabetes mellitus. Some giddiness was observed and, based on her inability to answer questions, her level of consciousness was checked and some disorientation was observed. She was diagnosed with delirium. A blood sample was collected to investigate the cause of the delirium, but the test data showed no hypoglycemia. Her appetite had declined since her husband was diagnosed with cancer. Thiamine deficiency was suspected as thiamine stores in the body are depleted within about 18 days and her loss of appetite had continued for 5 months. On intravenous injection of 100 mg of thiamine, her consciousness level was returned to normal in 1 h. A diagnosis of WE was supported by the patient's abnormally low serum thiamine level. Significance of the results The family members of cancer patients may develop a loss of appetite due to the burden of caring, resulting in WE. When providing care for signs of distress in family members, it is necessary to pay attention not only to the psychological aspects but also to their level of consciousness and physical aspects, particularly the possibility of serious illness resulting from reduced nutritional status.

Planning for the actual death

2015 ◽  
pp. 515-530 ◽  
Author(s):  
Patricia Berry ◽  
Julie Griffie
Keyword(s):  
End Of Life ◽  
Healthcare Professionals ◽  
Family Members ◽  
The Body ◽  
Postmortem Changes ◽  
Family Needs ◽  
Goals Of Care ◽  
Aggressive Management ◽  
A Priority

The care of patients and families near to death and afterward is an important nursing function—arguably one of the most important things nurses do. At the end of life, nurses and other healthcare professionals often only have one chance to “get it right.” Assessment and aggressive management of symptoms must remain a priority, especially as death approaches. Goals of care inevitably change in rhythm with patient and family needs and wishes. Care of the body after death, including normalizing and interpreting postmortem changes and honoring rituals and individual requests, is critically important in communicating to family members and close others that the person who died was indeed important and valued.

scholarly journals Clinical practice guidelines adherence, knowledge and awareness in rare and complex connective tissue diseases across Europe: results from the first ERN ReCONNET survey

RMD Open ◽  
2020 ◽  
Vol 6 (2) ◽  
pp. e001344
Author(s):  
Rosaria Talarico ◽  
Diana Marinello ◽  
Stefano Bombardieri ◽  
Gerd Burmester ◽  
Joao Fonseca ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Connective Tissue ◽  
Clinical Practice Guidelines ◽  
Practice Guidelines ◽  
Healthcare Professionals ◽  
Musculoskeletal Diseases ◽  
Family Members ◽  
Disease Patient ◽  
Connective Tissue Diseases ◽  
Reference Network

IntroductionThe European Reference Network (ERN) ReCONNET is the ERN aimed at improving the management of rare and complex connective tissue and musculoskeletal diseases (rCTDs) across the European Union (EU). In the mission of ERN ReCONNET, clinical practice guidelines (CPGs) play a crucial role, representing a valid tool towards the harmonisation of the management of rCTDs while improving effectiveness and quality of care delivered to patients.MethodsERN ReCONNET developed two surveys to map the adherence to rCTDs CPGs among healthcare providers and to assess the knowledge and awareness of CPGs for their diseases among patients, family members and caregivers.ResultsThe results of the surveys highlighted that healthcare professionals find it useful to apply CPGs in clinical practice (93%), while 62% of them experience difficulties and barriers in the application in their centres. Healthcare professionals also highlighted the need to develop CPGs for all rCTDs and to implement the use of the existing CPGs in clinical practice. On the other hand, patients, families and caregivers are relatively aware of the purpose of CPGs (51%) and 62% of them were aware of the existence of CPGs for their disease. Patient-friendly versions of CPGs and patients’ lifestyle guidelines should be systematically developed contributing to the empowerment of patients in the disease management.ConclusionERN ReCONNET is addressing the main issues identified in the results of the survey, promoting practical actions for the local adaptation of CPGs across Europe, improving their routine clinical use and increasing the awareness on CPGs among rCTDs patients, family members and caregivers.

scholarly journals Cancer patients’ family members’ experiences of the information and support provided by healthcare professionals

2018 ◽  
Vol 78 (4) ◽  
pp. 416-427 ◽  
Author(s):  
Jacqueline F Lavallée ◽  
Sarah Grogan ◽  
Carol A Austin
Keyword(s):  
Cancer Patients ◽  
Information Acquisition ◽  
Healthcare Professionals ◽  
Family Members ◽  
Sources Of Information ◽  
Structured Interviews ◽  
Loved One ◽  
Critical Realist ◽  
Sensitive Topics ◽  
Data Collection And Analysis

Objectives: This qualitative study aimed to understand the experiences, information and support needs of family members of cancer patients and their satisfaction with the services provided to them as a family member. Design: Inductive qualitative and critical realist approach to data collection and analysis. Methods: Purposive sampling was used to identify family members of cancer patients. We conducted semi-structured interviews with 10 participants by means of email, enabling us to explore sensitive topics at a pace appropriate for each participant and gain rich sources of information. We analysed the data using an inductive thematic approach. Results: Three superordinate themes were identified: information acquisition, seeking support and family members’ experiences of cancer. Needs were high, and a complex relationship between information and support was apparent. Many participants felt dissatisfied with the support and information received as it was sometimes inconsistent, incorrect or vague, and some reported deterioration in their own health as a consequence. Online communities were reported as being informative and supportive as the participants felt they could relate to the firsthand experience of the other members. Conclusion: Improving healthcare professionals’ awareness of the type of information and support the family members need is vital for both family members and patients. There is a need for the development of educational and psychological interventions to assist family members in coping when a loved one is diagnosed with cancer, is undergoing or recovering from treatment, or is receiving palliative care.

Developing a Living with Hope Program for Caregivers of Family Members with Advanced Cancer

2007 ◽  
Vol 23 (1) ◽  
pp. 24-31 ◽  
Author(s):  
Wendy Duggleby ◽  
Karen Wright ◽  
Allison Williams ◽  
Lesley Degner ◽  
Allison Cammer ◽  
...  
Keyword(s):  
Advanced Cancer ◽  
Family Members
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