scholarly journals Parenting while living with advanced cancer: A qualitative study

2016 ◽  
Vol 31 (3) ◽  
pp. 231-238 ◽  
Author(s):  
Eliza M Park ◽  
Devon K Check ◽  
Mi-Kyung Song ◽  
Katherine E Reeder-Hayes ◽  
Laura C Hanson ◽  
...  
Keyword(s):  
Decision Making ◽  
Qualitative Study ◽  
Functional Status ◽  
Advanced Cancer ◽  
Metastatic Cancer ◽  
Eastern Cooperative Oncology Group ◽  
Comprehensive Cancer Center ◽  
Cancer Center ◽  
Parental Concerns ◽  
The Impact

Background: Patients with advanced cancer who have dependent children are an important population with a life-limiting illness and high levels of psychological distress. Few studies have addressed the experience of being a parent with advanced cancer and their potential palliative needs. Aim: To describe the experience of living with advanced cancer as a parent, including illness experience, parental concerns, and treatment decision making and to explore whether these experiences differ by their functional status. Design: We conducted a cross-sectional, qualitative study using in-depth, semi-structured interviews. Data were analyzed using thematic content analysis. Setting and participants: A total of 42 participants with metastatic cancer and with at least one child under the age of 18 years were recruited from a comprehensive cancer center. 25 participants were rated as having high functional status (the Eastern Cooperative Oncology Group (ECOG) Performance Status Scale = 0–1) and 17 with low functional status (ECOG=2–4). Results: We identified four themes regarding the experience of being a parent with advanced cancer: (1) parental concerns about the impact of their illness and death on their children, (2) “missing out” and losses of parental role and responsibilities, (3) maintaining parental responsibilities despite life-limiting illness, and (4) parental identity influencing decision making about treatment. Parental functional status influenced not only physical responsibilities but also intensified parenting psychological concerns. Conclusion: Parents with metastatic cancer may have unique palliative care needs as they experience parenting concerns while managing the psychological and physical demands of advanced cancer.

A comparison of treatment preferences, decision making, and psychosocial outcomes in advanced cancer patients with and without minor children: A matched cohort study.

2019 ◽  
Vol 37 (31_suppl) ◽  
pp. 91-91
Author(s):  
Eliza Myung Park ◽  
Allison Mary Deal ◽  
Laura C. Hanson ◽  
Donald L. Rosenstein ◽  
Laura J. Quillen ◽  
...  
Keyword(s):  
Decision Making ◽  
Advanced Cancer ◽  
Psychosocial Functioning ◽  
Metastatic Cancer ◽  
Well Being ◽  
Influential Factor ◽  
Life Extension ◽  
Treatment Preferences ◽  
Minor Children ◽  
The Impact

91 Background: Patients with advanced cancer who have minor children face unique challenges when coping with their life-limiting illness and the impact of their illness on their families. The goal of this study was to examine whether psychosocial functioning, treatment preferences, and treatment decisions in advanced cancer differ by parental status. Methods: A cohort of 60 parents with metastatic solid tumors age-matched with 60 non-parents (N = 120) participated in three structured interviews assessing treatment preferences and decisions over six months with complementary medical record review. Participants also completed validated measures of psychosocial functioning. Results: Seventy percent (n = 85) of the sample completed all study assessments. Mean age (45 years, SD 8), mean performance status score (ECOG = 1.2, SD 0.9), median duration of metastatic illness (19 months, range 1-115), gender ratio (66% female), and dropout rates were similar between groups. Parents and non-parents reported similar overall health-related quality of life, but parents were more likely to report poorer emotional well-being (p = 0.006) and more symptoms of depression (p = 0.04) and anxiety (p = 0.04) than non-parents. Parents and non-parents were equally likely to describe life-extension as their primary goal of anti-neoplastic treatment. Parents reported greater willingness to live in pain (48% “very willing” vs 27%, p = 0.007) and accept intubation/ventilation (40% vs 20%, p = 0.01) for life-extension. Compared to non-parents, parents were more likely to report their family members as the most influential factor in their decision-making (44% vs 12%) and less likely to cite their oncologist’s recommendation (25% vs 41%). There were no significant differences between groups for completion of a health care power of attorney or living will. Conclusions: Compared to similarly aged adults with metastatic cancer, parents experience greater psychological distress, are more willing to live in pain for life extension, and place greater importance on family-related factors in their cancer treatment decision-making.

Care, quality, and cost implications of the timing of palliative care consultation among patients with advanced cancer.

2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 8-8 ◽  
Author(s):  
Colin Scibetta ◽  
Michael W. Rabow ◽  
Kathleen Kerr
Keyword(s):  
Palliative Care ◽  
Medical Care ◽  
Direct Cost ◽  
Advanced Cancer ◽  
Metastatic Cancer ◽  
Care Quality ◽  
Cost Of Care ◽  
Comprehensive Cancer Center ◽  
Inpatient Cost ◽  
Cancer Center

8 Background: ASCO recommends that early palliative care (PC) be offered alongside standard cancer care for patients with metastatic cancer and/or high symptom burden. There is limited data about how the timing of PC affects the quality, intensity, and cost of care at the end of life for patients with advanced cancer. Methods: We analyzed administrative and billing data to assess patterns of healthcare utilization for a cohort of patients at an academic comprehensive cancer center who died from cancer between Jan 1, 2010 and May 31, 2012. We examined the associations of early PC (>90 days prior to death) versus late PC (<90 days prior to death) with QOPI, NQF, and other established quality metrics and direct cost of medical care in last 6 months of life. Results: Among 978 decedents who received treatment at the cancer center, only 298 (30%) had specialty PC referrals. Of these patients, 94 (9.6% of decedents, 31.5% of referrals) had early PC while 204 (21% of decedents, 68.5% of referrals) had late PC. Patients who received early PC had a lower rate of inpatient admissions in the last month of life (33% vs. 66%, p=0.002), lower rates of ICU stay in last month of life (5% vs. 20%, p=0.0005), fewer ED visits in last month (34% vs. 54%, p=0.0002), fewer instances of hospice length of service <3 days (7% vs. 20%, p=0.0001), and a lower rate of inpatient death (15% vs. 34%, p=0.0001). Most patients (84%) who received early PC were seen as outpatients, while late PC was mostly delivered in the hospital (82.4%). Of the late PC cohort, only 52 (25.4%) were ever seen in the outpatient PC clinic, but 170 (83%) had at least one oncology office visit 91-180 days prior to death. The direct cost of inpatient medical care in the last 6 months of life for patients with early PC was reduced when compared to patients who had late PC ($19k vs. $25.7k), while the direct cost of outpatient care was higher in the early PC compared to late PC population ($13k vs. $11.5k). Conclusions: Early PC is associated with less intensive medical care and improved quality outcomes at the EOL for patients with advanced cancer. Early PC results in a significant inpatient cost savings with a modest increase in outpatient costs. Early PC is likely best delivered in the outpatient setting.

Does a treatment delay affect the survival of octogenarian patient population?

2017 ◽  
Vol 35 (8_suppl) ◽  
pp. 149-149
Author(s):  
Ali Mehmood Raufi ◽  
Hassaan Jafri ◽  
Todd W. Gress
Keyword(s):  
Cancer Treatment ◽  
Cancer Patients ◽  
Patient Population ◽  
Gynecological Cancer ◽  
Eastern Cooperative Oncology Group ◽  
Treatment Delay ◽  
Comprehensive Cancer Center ◽  
Cancer Center ◽  
Cancer Management ◽  
The Impact

149 Background: The cancer management of the elderly patient is an increasingly important and challenging issue. The aim of this retrospective analysis is to evaluate the impact of treatment delay on survival outcome of cancer in octogenarian patients. Methods: From 2006 to 2015, established cancer patients age 80 and above who received treatment at our comprehensive cancer center were retrospectively reviewed. We evaluated the relationship between a delay in cancer treatment of more than 30 days in the octogenarian patient and survival using Kaplan-Meier survival and Cox proportional hazards models. Results: There were 235 octogenarian cancer patients available for evaluation and 115 of these had a delay in initiation of cancer treatment ( > 30 days). Mean age was 83.7 years the treatment delay (TD) group and 83.9 in the no treatment delay (NTD) group (p = 0.70) Eastern Cooperative Oncology Group (ECOG) score of 2 or more was present in 22.6% of the TD group and 18.3% of the NTD group (p = 0.42). Metastatic disease was higher in the NTD group (22.5% vs. 11.3% TD group; p = 0.051). There were more breast (36.5% TD vs. 12.5% NTD group) and lung cancer (26.9% TD vs. 18.3% NTD group) in the TD group, and more genitourinary (20.8% NTD vs. 9.6% TD group) and gynecological cancer (20.8% NTD vs. 15.6% TD group) in the NTD group (p < 0.001 for overall comparison). Median overall survival was higher in the TD group (50 vs. 24 months NTD group; p = 0.001). Treatment delay was still associated with improved survival even after adjusting for age, gender, ECOG, stage of disease, and type of tumor (HR 0.64, CI 0.44-0.92). Conclusions: We found that a delay in cancer treatment in the octogenarian patient was associated with better overall survivial. Bias in regards to the reasons for the treatment delay may exist and could have affected our results. We attempted to minimize this bias by adjusting for characteristics that influence treatment between our two study groups. Nevertheless, our findings suggest that a delay in cancer treatment at minimum did not adversely affect mortality in this older patient population.

scholarly journals Compounded trauma: A qualitative study of the challenges for refugees living with advanced cancer

2021 ◽  
pp. 026921632110002
Author(s):  
Ping Guo ◽  
Sawsan Alajarmeh ◽  
Ghadeer Alarja ◽  
Waleed Alrjoub ◽  
Ayman Al-Essa ◽  
...  
Keyword(s):  
Social Support ◽  
Qualitative Study ◽  
Advanced Cancer ◽  
Psychosocial Support ◽  
Large Population ◽  
Community Support ◽  
Support Network ◽  
Psychosocial Needs ◽  
Physical And Mental Health ◽  
The Impact

Background: Although palliative care is now an essential health service under Universal Health Coverage, ensuring access and appropriate care for refugees is a specific challenge for this large population. Aim: To identify the needs and experiences of adult refugees in Jordan with advanced cancer and informal caregivers. Design: A qualitative study using semi-structured interviews. Setting/participants: Participants were purposively sampled at two Jordanian hospitals to achieve heterogeneity by age, gender, country of origin, and primary diagnosis. Results: Twenty-nine refugees (22 patients, 7 caregivers) participated, and four themes were generated: (1) Psychological distress and sustaining social support. Refugees often experienced unmet psychosocial needs. However, psychosocial support was reported either absent or limited. (2) Knowledge and uncertainty. Lack of information and poor communication between healthcare providers and patients caused significant distress due to uncertainty. (3) Family anxiety and support roles. Being away from the home country cut patients and caregivers off from their wider social support network, which added increased anxiety and responsibilities to caregivers. (4) Compounded trauma and poverty. Many refugees have experienced trauma related to war that may affect their physical and mental health. They faced serious financial crises caused by the rising cost of medicines and treatment. Conclusions: This study reveals the impact of fractured families and networks on social support in advanced cancer, and the compounding trauma of the disease for refugees. Detailed person-centred assessment and emphasis on psychosocial support is essential, and home-based care should not presume community support for patients to remain at home.

scholarly journals Changes in fatigue, barriers, and predictors towards physical activity in advanced cancer patients over a period of 12 months—a comparative study

2021 ◽  
Author(s):  
J. Frikkel ◽  
M. Beckmann ◽  
N. De Lazzari ◽  
M. Götte ◽  
S. Kasper ◽  
...  
Keyword(s):  
Physical Activity ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Physical Functioning ◽  
Comprehensive Cancer Center ◽  
Cancer Center ◽  
Advanced Cancer Patients ◽  
Psychological Conditions ◽  
Patient Reported

Abstract Purpose Physical activity (PA) is recommended to improve advanced cancer patients’ (ACP) physical functioning, fatigue, and quality of life. Yet, little is known about ACPs’ attitude towards PA and its influence on fatigue and depressiveness over a longer period. This prospective, non-interventional cohort study examined ACPs’ fatigue, depression, motivation, and barriers towards PA before and after 12 months of treatment among ACP Methods Outpatients with incurable cancer receiving treatment at a German Comprehensive Cancer Center reporting moderate/severe weakness/tiredness during self-assessment via MIDOS II were enrolled. Fatigue (FACT-F), depression (PHQ-8), cancer-related parameters, self-assessed PA behavior, motivation for and barriers against PA were evaluated (T0). Follow-up data was acquired after 12 months (T1) using the same questionnaire. Results At follow-up, fatigue (p=0.017) and depressiveness (p=0.015) had increased in clinical relevant extent. Physically active ACP did not show significant progress of FACT-F (p=0.836) or PHQ-8 (p=0.799). Patient-reported barriers towards PA remained stable. Logistic regression analyses identified motivation as a positive predictor for PA at both time points (T0, β=2.152, p=0.017; T1, β =2.264, p=0.009). Clinically relevant depression was a negative predictor for PA at T0 and T1 (T0, β=−3.187, p=0.044; T1, β=−3.521, p=0.041). Conclusion Our findings emphasize the importance of psychological conditions in physical activity behavior of ACP. Since psychological conditions seem to worsen over time, early integration of treatment is necessary. By combining therapy approaches of cognitive behavioral therapy and exercise in interdisciplinary care programs, the two treatment options might reinforce each other and sustainably improve ACPs’ fatigue, physical functioning, and QoL. Trial registration German Register of Clinical Trials, DRKS00012514, registration date: 30.05.2017

Adaptation and Psychometric Evaluation of the Parenting Concerns Questionnaire—Advanced Disease

2021 ◽  
pp. 104990912110498
Author(s):  
Eliza M. Park ◽  
Mian Wang ◽  
Savannah M. Bowers ◽  
Anna C. Muriel ◽  
Paula K. Rauch ◽  
...  
Keyword(s):  
Functional Status ◽  
Advanced Cancer ◽  
Internal Consistency ◽  
Convergent Validity ◽  
Advanced Disease ◽  
Full Range ◽  
Psychometric Evaluation ◽  
Face Validity ◽  
Concept Elicitation ◽  
The Impact

Purpose: When patients with advanced cancer have minor children (age < 18), their health-related quality of life is closely linked to their concerns about the impact of progressive illness and death on their children. The Parenting Concerns Questionnaire (PCQ), a validated measure for parents with cancer, does not capture the full range of concerns in advanced cancer. The aim of this was study was to adapt and establish psychometrics for the PCQ for advanced disease (PCQ-AD). Methods: After generating an initial item-bank, we conducted concept elicitation interviews with clinicians (n = 8) and cognitive interviews with patients (n = 23) for face validity. New items addressed concerns about impact of parental death, making every moment count, communication, and financial impact of cancer on children. We administered 21 candidate items to 151 parents with advanced cancer. We conducted confirmatory factor analysis (CFA), calculated internal consistency, and assessed convergent and known-groups validity. Results: We removed 8 redundant items due to residual covariation between items. CFA of the 13-item PCQ-AD demonstrated satisfactory fit (CFI = 0.971, TLI = 0.966, RMSEA = 0.081) and high internal consistency (Cronbach’s alpha = 0.94, composite reliability = 0.95). The PCQ-AD demonstrated convergent validity and known-groups validity; patients with poor functional status reported higher scores than patients with better functional status (Cohen’s d = 0.56, p = 0.002). Conclusion: Adaptation of the PCQ yielded the addition of constructs important in advanced cancer. The PCQ-AD appears to be a reliable and valid measure of parenting concerns in advanced cancer, but future studies are needed to examine measure performance in diverse populations and responsiveness of the PCQ-AD to interventions.

scholarly journals Antineoplastic therapy use in patients with advanced cancer admitted to an acute palliative care unit at a comprehensive cancer center

Cancer ◽  
2010 ◽  
Vol 116 (8) ◽  
pp. 2036-2043 ◽  
Author(s):  
David Hui ◽  
Ahmed Elsayem ◽  
Zhijun Li ◽  
Maxine De La Cruz ◽  
J. Lynn Palmer ◽  
...  
Keyword(s):  
Palliative Care ◽  
Antineoplastic Therapy ◽  
Advanced Cancer ◽  
Palliative Care Unit ◽  
Comprehensive Cancer Center ◽  
Cancer Center

Abstract 17488: What Are the Gaps? A Qualitative Study on Patient and Family Decision Making Regarding Implantable Cardioverter Defibrillator and Cardiac Resynchronization Therapy

Circulation ◽  
2020 ◽  
Vol 142 (Suppl_3) ◽  
Author(s):  
Qi Zheng ◽  
Sarah Goodlin
Keyword(s):  
Heart Failure ◽  
Decision Making ◽  
Qualitative Study ◽  
Cardiac Resynchronization Therapy ◽  
Functional Status ◽  
Implantable Cardioverter Defibrillator ◽  
Cardiac Resynchronization ◽  
Resynchronization Therapy ◽  
Cardioverter Defibrillator ◽  
Life Style Changes

Background: Implantable cardioverter defibrillator (ICD) and cardiac resynchronization therapy (CRT-D) reduce mortality and improve functional status in selected patients with heart failure (HF). However, there are potential procedural risks and psychosocial concerns associated with device implant. This qualitative study aims to explore patients’ and families’ understanding of ICD/CRT-D, heart failure and arrhythmia in the process of decision making regarding device implant. Methods: We conducted 14 focus groups or interviews in Salt Lake City UT and Silver Spring MD. This study included 23 patients, who had either an ICD or CRT-D implant for primary prevention, and 14 family members. Grounded theory analysis was performed to reach a conceptual understanding of patients’ and families’ perceptions and needs. Results: Patients and families largely made decision of ICD/CRT implant based on physicians’ recommendations, e.g. “I really try to do what they tell me to do” (icdpt 1). Patients perceived ICD as lifesaving and CRT being helpful to improve functional status. Many patients described ICD as lifesaving by “restarting a heart if it stops”, while did not understand HF or ventricular arrhythmia. Patients perceived an urgency to consider ICD implant from their physicians, but no such urgency was perceived when they discussed about CRT-D implant. Few participants were concerned with costs, or had knowledge of potential lead malfunction, device removal and associated risks. Many emphasized the importance of information about life expectancies, what HF is, options of different devices, complications and precautions, and what to expect regarding lifestyle changes. Conclusion: Patients and families largely relied on the information provided by physicians and followed physicians’ guidance. They had limited understanding of their prognosis, HF and arrhythmia, and they were motivated to learn. Discussion about devices should include prognosis and healthy life style changes.

scholarly journals Understanding Relationship between Milestone and Decision-Making in Project Management: A Qualitative Study among Project Managers in Saudi Arabia

2018 ◽  
Vol 13 (8) ◽  
pp. 184 ◽  
Author(s):  
Umar Altahtooh ◽  
Thamir Alaskar
Keyword(s):  
Decision Making ◽  
Saudi Arabia ◽  
Project Management ◽  
Qualitative Study ◽  
Thematic Analysis ◽  
Project Managers ◽  
Structured Interviews ◽  
Pragmatic Research ◽  
The Impact ◽  
The Relationship

Despite the importance of milestone as a key knowledge in project management, there has been lack of research to understand the relationship between milestones and decision-making. This paper presents a pragmatic research context that aims understanding the nature of milestones and their relationship with different decision-making structures and responsibilities across projects. Data were collected through 14 semi-structured interviews with project managers and analyzed using thematic analysis. The findings explore the concepts of project milestones among project managers in Saudi Arabia. The paper finds that there is a relationship between milestones and the impact on decision-making.

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