Using an Anthropological Lens to Explore Motivators and Challenges for Follow-up Care Decision Making among Female BRCA1/2 Carriers at Risk for Inherited Cancer

2021 ◽  
Vol 80 (3) ◽  
pp. 203-213
Author(s):  
Ann Louise Tezak ◽  
Anne Weidner ◽  
Kate Clouse ◽  
Tuya Pal ◽  
Deborah Cragun
Keyword(s):  
Decision Making ◽  
Lived Experience ◽  
Self Efficacy ◽  
Perceived Threat ◽  
Ovarian Cancer Risk ◽  
Inherited Cancer ◽  
Response Efficacy ◽  
Follow Up Care ◽  
Care Decision

Females with a BRCA1/2 (BRCA) pathogenic variant have high lifetime risks for cancer. Regularly updated guidelines are in place that recommend screening and/or surgery to monitor and/or significantly reduce breast or ovarian cancer risk. Follow-up care decision making among this population is important to explore to understand the multi-faceted influences guiding cancer screening behaviors and risk-reducing surgery decisions. Using lived-experience theory and cognitive anthropology, this study explored emotional and social influences on decision making and behavioral adherence to guideline recommendations among twenty-seven female BRCA carriers. Ethnographic data from in-depth interviews were analyzed in parallel with self-reported survey data on perceived threat, response efficacy, and self-efficacy constructs. Survey results demonstrated high rates of adherence to guideline recommendations and high levels of perceived threat and response efficacy with lower levels of self-efficacy, while interview data revealed multi-faceted motivators and challenges associated with behavioral adherence. These findings unearth complex lived-experiences within the context of perceived threat, response efficacy, and self-efficacy and explore the cognitive relationship between motivators and challenges to inherited cancer follow-up care decision making and behavioral adherence. This study demonstrates how anthropological practice can aid in inherited cancer research and be used to support the development of interventions that consider cognitive influences on behavior.

scholarly journals Social support, self-efficacy for decision-making, and follow-up care use in long-term cancer survivors

2014 ◽  
Vol 23 (7) ◽  
pp. 788-796 ◽  
Author(s):  
Laura P. Forsythe ◽  
Catherine M. Alfano ◽  
Erin E. Kent ◽  
Kathryn E. Weaver ◽  
Keith Bellizzi ◽  
...  
Keyword(s):  
Social Support ◽  
Decision Making ◽  
Cancer Survivors ◽  
Self Efficacy ◽  
Follow Up Care

scholarly journals Assessing the Impact of Censoring of Costs and Effects on Health-Care Decision-Making: an Example Using the Atrial Fibrillation Follow-up Investigation of Rhythm Management (AFFIRM) Study

2008 ◽  
Vol 11 (3) ◽  
pp. 365-375 ◽  
Author(s):  
Elisabeth Fenwick ◽  
Deborah A. Marshall ◽  
Gordon Blackhouse ◽  
Humberto Vidaillet ◽  
April Slee ◽  
...  
Keyword(s):  
Atrial Fibrillation ◽  
Health Care ◽  
Decision Making ◽  
Health Care Decision ◽  
The Impact ◽  
Care Decision

scholarly journals 34 Newborn Jaundice Screening Nomogram for Universal Screening in Saskatchewan

2020 ◽  
Vol 25 (Supplement_2) ◽  
pp. e13-e13
Author(s):  
Krista Baerg ◽  
Julie Smith-Fehr ◽  
Chel Lee
Keyword(s):  
Decision Making ◽  
Confidence Interval ◽  
Universal Screening ◽  
Point Of Care ◽  
Support Point ◽  
Paediatric Society ◽  
Tertiary Center ◽  
Action Thresholds ◽  
Care Decision

Abstract Background Transcutaneous (TcB) meters support clinical decision making at point-of-care, reduces nurses’ time to screen, decreases the frequency of painful blood draws and minimizes health care costs. Best practice for TcB screening is unknown and international guidelines vary. Meter bias may result in over- or underestimation of TSB in a Canadian population. The Canadian Paediatric Society suggests screening between 24 and by 72 hours of age and reducing total serum bilirubin (TSB) action thresholds by the 95th confidence interval of the meter. To support point-of-care decision making, a tertiary center and community follow-up program uses universal screening and follow-up protocols. ​ Objectives The aim of this analysis is to develop a locally validated TcB nomogram with action thresholds based on age and risk for clinical use at point-of-care. ​ Design/Methods This prospective cross-sectional study includes newborns ≥35 weeks gestation <14 days old requiring TSB sampling in hospital or community and 13 JM-105 meters. Participants are included if TcB reading ranges from 1-340µmol/L (0.1-20.0 mg/dL) and TSB is collected within 1 hour of TcB measurement. TSB samples are analyzed using Roche™ Bilirubin Total Gen.3. To measure how close the TcB reading is to TSB, the difference is found by subtracting TSB from mean TcB. Lin’s Concordance statistics are calculated for each meter. Using a 2-dimentional 95th Confidence Interval ellipse, we select 13 JM-105 meters with similar accuracy and precision for use by the universal screening program. Using a quadratic model we fit a line based on the lower 95th predictive interval of the grouped meter data collected from 13 meters to Canadian Paediatric Society low, medium and high risk TSB thresholds for intensive phototherapy. ​ Results The study population includes 498 newborns that received 620 visits and 705 meter readings with thirteen JM-105 with mean birth weight 3.38 kilograms (SD=0.51) with thirteen JM-105. Along with the clinical screening protocol, nomograms for newborns 35-37 weeks gestation (high and medium risk thresholds) and 38+ weeks gestation medium and low risk thresholds) are presented. Newborns with TcB that plots in a potential treatment range will receive a TSB to determine if intensive phototherapy is required. Conclusion To support point-of-care decision making, a tertiary center and community follow-up program uses universal screening and follow-up protocols. TcB nomograms with action thresholds based on age and risk support point-of-care decision making.

scholarly journals Discharge from the acute hospital: trauma patients’ perceptions of care

2016 ◽  
Vol 40 (6) ◽  
pp. 625 ◽  
Author(s):  
Lara A. Kimmel ◽  
Anne E. Holland ◽  
Melissa J. Hart ◽  
Elton R. Edwards ◽  
Richard S. Page ◽  
...  
Keyword(s):  
Decision Making ◽  
Qualitative Study ◽  
Trauma Patient ◽  
Patient Involvement ◽  
Acute Hospital ◽  
Trauma Patients ◽  
Orthopaedic Trauma ◽  
Lack Of Information ◽  
Follow Up Care

Objective The involvement of orthopaedic trauma patients in the decision-making regarding discharge destination from the acute hospital and their perceptions of the care following discharge are poorly understood. The aim of the present study was to investigate orthopaedic trauma patient experiences of discharge from the acute hospital and transition back into the community. Methods The present qualitative study performed in-depth interviews, between October 2012 and November 2013, with patients aged 18–64 years with lower limb trauma. Thematic analysis was used to derive important themes. Results Ninety-four patients were interviewed, including 35 discharged to in-patient rehabilitation. Key themes that emerged include variable involvement in decision-making regarding discharge, lack of information and follow-up care on discharge and varying opinions regarding in-patient rehabilitation. Readiness for discharge from in-patient rehabilitation also differed widely among patients, with patients often reporting being ready for discharge before the planned discharge date and feeling frustration at the need to stay in in-patient care. There was also a difference in patients’ perception of the factors leading to recovery, with patients discharged to rehabilitation more commonly reporting external factors, such as rehabilitation providers and physiotherapy. Conclusion The insights provided by the participants in the present study will help us improve our discharge practice, especially the need to address the concerns of inadequate information provision regarding discharge and the role of in-patient rehabilitation. What is known about the topic? There is no current literature describing trauma patient involvement in decision-making regarding discharge from the acute hospital and the perception of how this decision (and destination choice; e.g. home or in-patient rehabilitation) affects their outcome. What does this paper add? The present large qualitative study provides information on patients’ opinion of discharge from the acute hospital following trauma and how this could be improved from their perception. Patients are especially concerned with the lack of information provided to them on discharge, their lack of involvement and understanding of the choices made with regard to their discharge and describe concerns regarding their follow-up care. There is also a feeling from the patients that they are ready to leave rehabilitation before their actual planned discharge date, a concept that needs further investigation. What are the implications for practitioners? The patient insights gained by the present study will lead to a change in discharge practice, including increased involvement of the patient in the decision-making in terms of discharge from both the acute and rehabilitation hospitals and a raised awareness of the need to provide written information and follow-up telephone calls to patients following discharge. Further research into many aspects of patient discharge from the acute hospital should be considered, including the use of rehabilitation prediction tools to ensure patient involvement in decision-making and a discharge and/or follow-up coordinator to ensure patients are aware of how to access information after discharge.

scholarly journals Racial and Ethnic Disparities in Patient-Provider Communication, Quality-of-Care Ratings, and Patient Activation Among Long-Term Cancer Survivors

2014 ◽  
Vol 32 (36) ◽  
pp. 4087-4094 ◽  
Author(s):  
Nynikka R.A. Palmer ◽  
Erin E. Kent ◽  
Laura P. Forsythe ◽  
Neeraj K. Arora ◽  
Julia H. Rowland ◽  
...  
Keyword(s):  
Perceived Control ◽  
Self Efficacy ◽  
Patient Activation ◽  
Ethnic Disparities ◽  
Care Quality ◽  
Medical Test ◽  
Racial And Ethnic Differences ◽  
Follow Up Care ◽  
Patient Provider Communication

Purpose We examined racial and ethnic disparities in patient-provider communication (PPC), perceived care quality, and patient activation among long-term cancer survivors. Methods In 2005 to 2006, survivors of breast, prostate, colorectal, ovarian, and endometrial cancers completed a mailed survey on cancer follow-up care. African American, Asian/Pacific Islander (Asian), Hispanic, and non-Hispanic white (white) survivors who had seen a physician for follow-up care in the past 2 years (n = 1,196) composed the analytic sample. We conducted linear and logistic regression analyses to identify racial and ethnic differences in PPC (overall communication and medical test communication), perceived care quality, and patient activation in clinical care (self-efficacy in medical decisions and perceived control). We further examined the potential contribution of PPC to racial and ethnic differences in perceived care quality and patient activation. Results Compared with white survivors (mean score, 85.16), Hispanic (mean score, 79.95) and Asian (mean score, 76.55) survivors reported poorer overall communication (P = .04 and P < .001, respectively), and Asian survivors (mean score, 79.97) reported poorer medical test communication (P = .001). Asian survivors were less likely to report high care quality (odds ratio, 0.47; 95% CI, 0.30 to 0.72) and reported lower self-efficacy in medical decisions (mean score, 74.71; P < .001) compared with white survivors (mean score, 84.22). No disparity was found in perceived control. PPC was positively associated with care quality (P < .001) and self-efficacy (P < .001). After adjusting for PPC and other covariates, when compared with whites, Asian disparities remained significant. Conclusion Asian survivors report poorer follow-up care communication and care quality. More research is needed to identify contributing factors beyond PPC, such as cultural influences and medical system factors.

scholarly journals Self-efficacy and comfort with partner-assisted skin examination in patients receiving follow-up care for melanoma

2017 ◽  
Author(s):  
J. DiMillo ◽  
D. C. Brosseau ◽  
C. Gomez-Garibello ◽  
N. C. Hall ◽  
H. Ezer ◽  
...  
Keyword(s):  
Self Efficacy ◽  
Skin Examination ◽  
Follow Up Care

scholarly journals A Randomized Controlled Pilot Trial About the Influence of Kyusho Jitsu Exercise on Self-efficacy, Fear, Depression, and Distress of Breast Cancer Patients within Follow-up Care

2021 ◽  
Vol 20 ◽  
pp. 153473542110379
Author(s):  
Jannike L Salchow ◽  
Maximilian A Strunk ◽  
Timo Niels ◽  
Jule Steck ◽  
Carrie-Ann Minto ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Cancer Survivors ◽  
Self Efficacy ◽  
Breast Cancer Survivors ◽  
Intervention Group ◽  
Control Group ◽  
Psychological Issues ◽  
Significant Difference ◽  
Follow Up Care

Introduction Breast cancer survivors are faced with several psychological issues. We report the influence on self-efficacy by a holistic orientated training schedule based on the “Kyusho Jitsu” martial art and explore the effects on self-efficacy, distress, fear, and depression. Methods Breast cancer survivors (N = 51) were randomly assigned to an intervention (n = 30) or control group (n = 21). The intervention group participated in a Kyusho Jitsu intervention twice a week over a period of 6 months, the control group received no intervention. Patients from both groups were measured at baseline, 3 and 6 months on level of self-efficacy (German General-Self-Efficacy Scale, SWE), stress (Perceived Stress Questionnaire, PSQ20), and fear and depression (Hospital Anxiety and Depression Scale, HADS). Results Analysis of the original data showed a significant difference between both groups regarding the subscale “joy” ( P = .018). Several significant results within the intervention group were seen in self-efficacy ( P = .014), fear ( P = .009) and the overall score for fear and depression ( P = .043). Both groups improved significantly within “worries” (intervention P = .006, control P = .019) and the PSQ20 overall score (both P = .005). The control group also significantly improved in the subscale for “demands” ( P = .019). Conclusion To summarize, our pilot study showed that Kyusho Jitsu training is safe and feasible. Though, the intervention alone cannot be considered as being effective enough to help breast cancer survivors regarding relevant psychological issues, but might be an important supplement offer within follow-up care.

scholarly journals Short and Long-term Barriers and Facilitators of Skin Self-Examination Among Individuals Diagnosed with Melanoma

2019 ◽  
Author(s):  
Adina Coroiu ◽  
Chelsea Moran ◽  
Catherine Bergeron ◽  
Martin Drapeau ◽  
Beatrice Wang ◽  
...  
Keyword(s):  
Self Efficacy ◽  
Skin Cancer Prevention ◽  
Prior History ◽  
Entire Body ◽  
Social Predictors ◽  
Follow Up Care ◽  
Short And Long Term ◽  
Self Examination

Abstract Background Melanoma can be lethal if not detected early and treated. Early detection can be facilitated via skin self-examination (SSE) and as such, SSE is part of melanoma follow-up care for individuals with a prior history, who face a life-long risk of reoccurrence. The objective of the current study was to identify short- and long-term predictors of SSE among melanoma survivors to inform future prevention interventions in high-risk groups. Method This is an observational study with longitudinal assessments conducted with adult melanoma patients in active follow-up care. Primary Outcome Measures: Behavioral outcomes, comprehensive SSE (checking up to 5 body areas in the last 3 months) and optimal SSE (checking the entire body at least monthly in the last 3 months) were assessed at 3, 12, and 24 months post a dermatological educational session on skin cancer prevention. T tests and chi square analyses were used to examine changes in outcomes from 3 to 12 and 24 months. Linear and logistic regression models were used to examine the association between predictors and the primary outcomes. Results Comprehensive SSE did not decrease significantly from 3 (M=2.7, SD=1.1) to 12 (M=2.6, SD=1.2) and 24 months (M=2.4, SD=1.2) post the education session, with the stronger predictor at all timepoints being intentions to perform SSE. Optimal SSE was higher at 3 months (59%) compared to 12 (46%) and 24 months (34%), with key predictors including self-efficacy and intentions to perform SSE and male sex at 3 months post; self-efficacy and reliance on medical advice at 12 months; and (lower) education and self-efficacy at 24 months. Conclusions The key findings of this study are that 1) survivors maintain SSE behaviour over time, but rates of SSE performed in agreement with medical recommendations are higher immediately post standard dermatological education (i.e. usual care) and decrease somewhat over a 24-month period; and 2) the strongest psycho-social predictors of SSE are intentions and self-efficacy to perform the behavior, which are highly modifiable, for example via motivational interviewing and goal setting health interventions.

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