scholarly journals At the Heart of It All: Emotions of Consequence for the Conceptualization of Caregiver-Reported Outcomes in the Context of Colorectal Cancer

2021 ◽  
Vol 28 (5) ◽  
pp. 4184-4202
Author(s):  
A. Fuchsia Howard ◽  
Kelsey Lynch ◽  
Scott Beck ◽  
Maria-José Torrejón ◽  
Jonathan Avery ◽  
...  

Colorectal cancer (CRC) can be demanding for primary caregivers; yet, there is insufficient evidence describing the caregiver-reported outcomes (CROs) that matter most to caregivers. CROs refer to caregivers’ assessments of their own health status as a result of supporting a patient. The study purpose was to describe the emotions that were most impactful to caregivers of patients with CRC, and how the importance caregivers attribute to these emotions changed from diagnosis throughout treatment. Guided by qualitative Interpretive Description, we analyzed 25 caregiver and 37 CRC patient interviews, either as individuals or as caregiver-patient dyads (six interviews), using inductive coding and constant comparative techniques. We found that the emotional aspect of caring for a patient with CRC was at the heart of caregiving. Caregiver experiences that engendered emotions of consequence included: (1) facing the patient’s life-changing diagnosis and an uncertain future, (2) needing to be with the patient throughout the never-ending nightmare of treatment, (3) bearing witness to patient suffering, (4) being worn down by unrelenting caregiver responsibilities, (5) navigating their relationship, and (6) enduring unwanted change. The broad range of emotions important to caregivers contributes to comprehensive foundational evidence for future conceptualization and the use of CROs.

Endoscopy ◽  
2020 ◽  
Vol 52 (12) ◽  
pp. 1127-1141
Author(s):  
Cristiano Spada ◽  
Cesare Hassan ◽  
Davide Bellini ◽  
David Burling ◽  
Giovanni Cappello ◽  
...  

Main recommendations 1 ESGE/ESGAR recommend computed tomographic colonography (CTC) as the radiological examination of choice for the diagnosis of colorectal neoplasia.Strong recommendation, high quality evidence.ESGE/ESGAR do not recommend barium enema in this setting.Strong recommendation, high quality evidence. 2 ESGE/ESGAR recommend CTC, preferably the same or next day, if colonoscopy is incomplete. The timing depends on an interdisciplinary decision including endoscopic and radiological factors.Strong recommendation, low quality evidence.ESGE/ESGAR suggests that, in centers with expertise in and availability of colon capsule endoscopy (CCE), CCE preferably the same or the next day may be considered if colonoscopy is incomplete.Weak recommendation, low quality evidence. 3 When colonoscopy is contraindicated or not possible, ESGE/ESGAR recommend CTC as an acceptable and equally sensitive alternative for patients with alarm symptoms.Strong recommendation, high quality evidence.Because of lack of direct evidence, ESGE/ESGAR do not recommend CCE in this situation.Very low quality evidence.ESGE/ESGAR recommend CTC as an acceptable alternative to colonoscopy for patients with non-alarm symptoms.Strong recommendation, high quality evidence.In centers with availability, ESGE/ESGAR suggests that CCE may be considered in patients with non-alarm symptoms.Weak recommendation, low quality evidence. 4 Where there is no organized fecal immunochemical test (FIT)-based population colorectal screening program, ESGE/ESGAR recommend CTC as an option for colorectal cancer screening, providing the screenee is adequately informed about test characteristics, benefits, and risks, and depending on local service- and patient-related factors.Strong recommendation, high quality evidence.ESGE/ESGAR do not suggest CCE as a first-line screening test for colorectal cancer.Weak recommendation, low quality evidence. 5 ESGE/ESGAR recommend CTC in the case of a positive fecal occult blood test (FOBT) or FIT with incomplete or unfeasible colonoscopy, within organized population screening programs.Strong recommendation, moderate quality evidence.ESGE/ESGAR also suggest the use of CCE in this setting based on availability.Weak recommendation, moderate quality evidence. 6 ESGE/ESGAR suggest CTC with intravenous contrast medium injection for surveillance after curative-intent resection of colorectal cancer only in patients in whom colonoscopy is contraindicated or unfeasibleWeak recommendation, low quality evidence.There is insufficient evidence to recommend CCE in this setting.Very low quality evidence. 7 ESGE/ESGAR suggest CTC in patients with high risk polyps undergoing surveillance after polypectomy only when colonoscopy is unfeasible.Weak recommendation, low quality evidence.There is insufficient evidence to recommend CCE in post-polypectomy surveillance.Very low quality evidence. 8 ESGE/ESGAR recommend against CTC in patients with acute colonic inflammation and in those who have recently undergone colorectal surgery, pending a multidisciplinary evaluation.Strong recommendation, low quality evidence. 9 ESGE/ESGAR recommend referral for endoscopic polypectomy in patients with at least one polyp ≥ 6 mm detected at CTC or CCE.Follow-up CTC may be clinically considered for 6 – 9-mm CTC-detected lesions if patients do not undergo polypectomy because of patient choice, comorbidity, and/or low risk profile for advanced neoplasia.Strong recommendation, moderate quality evidence.


2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S327-S327
Author(s):  
Rachel Zmora ◽  
Jessica M Finlay ◽  
Lauren L Mitchell ◽  
Joseph E Gaugler

Abstract The benefits of technology to alert family caregivers to the needs of persons with Alzheimer’s disease or related dementias (ADRD) are unclear. Previous research indicates that remote activity monitoring (RAM) system alerts can be alternately reassuring and highly stressful for caregivers. We conducted a parallel convergent mixed-methods analysis of 62 primary caregivers of persons with ADRD to evaluate the association between the number of alerts and caregiver outcomes after 6 months. We assessed caregiver-reported usability of the system as well as self-efficacy, sense of competence, and distress as primary outcomes. Linear regression models tested the association between the number of alerts and caregiver-reported usability and primary outcomes. The number of alerts declined over the first 6 months of system use and was not associated with a change in system usability or primary outcomes. Thematic analysis of caregiver-reported perceptions of RAM use simultaneously probed for more in-depth understanding of caregiver experiences of and feelings towards RAM. Preliminary analyses reveal that 28% of caregivers comments were positive, noting benefits such as early warning of health concerns and peace of mind. 34% of comments were neutral or mixed, and 38% were negative. Concerns included false alarms and accidental triggers, losing sleep due to alarms, and difficulties using the system. These findings help characterize the adjustment period to use RAM technology. The mixed-method results inform future research studies and applications of RAM systems so that researchers and caregivers can better understand the initial adjustment period, address concerns, and avoid discontinuing RAM use prematurely.


Author(s):  
Jacek T. Soroka ◽  
Krista J. Fling ◽  
Jennifer M. Heibel ◽  
Gregory R. Kutcher ◽  
Sarah J. Ward

Objectives: Little is known about the experiences of caregivers who provide care to persons with terminal delirium (TD) in home settings. This scarcity of information is suggestive that further research is needed about care for hospice patients with delirium in the home and community. Aim: To elicit views, feelings, and end-of-life care experiences of primary caregivers assisting dying persons with TD in hospice at home. Design: Qualitative, exploratory, cross-sectional study design was chosen. In-depth semistructured interviews explored caregiver experiences in caring for persons with TD. Qualitative thematic framework analysis was used. Participants: Fifteen bereaved adult primary caregivers who received services from a hospice care program affiliated with a large nonprofit health system in the US Midwest. Results: Caregiver experiences were broad and reflected 4 major themes: symptomology, coping, effective and noneffective interventions, and support. The most distressing factors for caregivers were behaviors and symptomology of TD. They did not know what to say, how to respond, and how best to behave with someone who had delirium. Many caregivers had the impression that medication does not lessen delirium symptoms and that nonpharmacologic interventions are effective and beneficial only when they were important and meaningful to patients before delirium onset. Conclusions: This study added new knowledge from direct and personal perspectives of caregivers providing end-of-life care to patients at home. Understanding developed about provision of care to someone with TD in home hospice. Improved comprehension of caregiver experiences can help professional hospice and palliative care staff better prepare caregivers for when patients have TD.


2001 ◽  
Vol 120 (5) ◽  
pp. A121-A122
Author(s):  
T EZAKI ◽  
M WATANABE ◽  
S FUNAKOSHI ◽  
M NAGANUMA ◽  
T AZUMA ◽  
...  

2001 ◽  
Vol 120 (5) ◽  
pp. A602-A602
Author(s):  
S RAWL ◽  
S BLACKBURN ◽  
L HACKWARD ◽  
N FINEBERG ◽  
T IMPERIALE ◽  
...  

2001 ◽  
Vol 120 (5) ◽  
pp. A599-A600 ◽  
Author(s):  
L HERSZENYI ◽  
F FARINATI ◽  
G ISTVAN ◽  
M PAOLI ◽  
G ROVERONI ◽  
...  

2001 ◽  
Vol 120 (5) ◽  
pp. A599-A599
Author(s):  
C ARNOLD ◽  
A GOEL ◽  
J CARETHERS ◽  
L WASSERMAN ◽  
C COMPTON ◽  
...  

2001 ◽  
Vol 120 (5) ◽  
pp. A159-A159
Author(s):  
M TUTTON ◽  
M GEORGE ◽  
S ECCLES ◽  
I SWIFT ◽  
M ABULAFI
Keyword(s):  

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