Barriers in Providing Psychosocial Support for Patients With Cancer

PURPOSE Patients with cancer in low- and middle-income countries face complex socioeconomic barriers within health systems that can lead to poor oncologic outcomes. Patient navigation has been shown to reduce disparities in oncologic outcomes in the United States. Belize, a middle-income country in Central America, has recently launched its first-ever public medical oncology program. Here, we report on the development of Directly Observed Care (DOC), a pilot patient navigation care model for patients with cancer in Belize, inspired from directly observed treatment for tuberculosis. METHODS DOC will be a patient-centered program, where a nurse trained in patient navigation will assume responsibility for proactively identifying barriers that Belizean patients with cancer face in access to care and working to remove them. This process will include patient education on cancer and its treatment, identification of financial barriers to care and potential funding sources, assistance with care logistics such as transportation and childcare, and referral to psychosocial support services for patients who need them. DOC will rely on an electronic patient-tracking platform, which will allow real-time tracking of all oncology patients and identify patients who miss or delay treatments. This will allow timely intervention and continuous quality monitoring of the program. In addition to patient navigation, DOC will seek to reduce delays in patient care by liaising with pathology and radiology services. RESULTS The program is in its development and pilot phase. So far, approximately 100 patients have been seen for consultation. We intend to capture epidemiologic data about cancer in Belize, as well as real-time data about the progression of patients through their treatment course. We aim to identify critical delays to patients’ care and design interventions to address them. CONCLUSION We believe that the DOC program will be particularly beneficial for the oncology patient population in Belize, because this population has a high burden of socioeconomic barriers to care and is largely unfamiliar with the complexity of oncologic care. We hypothesize that DOC can improve treatment appropriateness and timeliness and, thereby, patient outcomes in Belize.

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Fear of COVID-19: Effects on mental health in under-resourced patients with cancer.

Journal of Clinical Oncology ◽

10.1200/jco.2020.39.28_suppl.152 ◽

2021 ◽

Vol 39 (28_suppl) ◽

pp. 152-152

Author(s):

Valerie Lawhon ◽

Nicole E. Caston ◽

Karen L. Smith ◽

Kathleen D. Gallagher ◽

Chao-Hui Huang ◽

...

Keyword(s):

Psychological Distress ◽

High Risk ◽

Repeated Measures ◽

Psychosocial Support ◽

Survey Study ◽

Equation Modeling ◽

Area Deprivation ◽

Cancer Type ◽

Patients With Cancer ◽

Distress Score

152 Background: Given the high risk of COVID-19 mortality, patients with cancer are not only vulnerable to physical consequences of COVID-19 infection, but also to adverse psychological outcomes, including fear of COVID-19. Without intervention, psychological distress in patients with cancer can lead to worsening symptoms, poor quality of life, and lower survival. We sought to evaluate the association between fear of COVID-19 and psychological distress for under-resourced patients with cancer during the pandemic. Methods: This observational, longitudinal survey study, fielded during early (May 20- July 11, 2020) and later pandemic (December 2-December 23, 2020), evaluated the pandemic’s impact on patients with cancer receiving Patient Advocate Foundation (PAF) services from July 2019 – April 2020. Questions focused on individual experiences with COVID-19 and psychological, emotional, physical, and material effects from the pandemic. The validated Fear of COVID-19 Scale was used to determine fear of COVID-19. Psychological distress was determined using a four-item questionnaire by Holingue et al. (score range 4 – 16). Means and 95% confidence intervals (CI) were estimated using generalized estimating equation modeling with repeated measures to assess the effect of fear of COVID-19 on psychological distress early and later in the pandemic. Models adjusted for age, sex, race/ethnicity, region, annual household income, household size, marital status, employment status, Area Deprivation Index category, Rural-Urban Commuting Code category, cases per 100,000 in county of residence, cancer type, and number of comorbidities. Results: Amongst 1199 survey respondents, 94% considered themselves high risk for COVID-19. 448 respondents completed both the first and second survey. The majority of respondents were female (72%) and age 56-75 (55%); 40% were Black, Indigenous, or Persons of Color. In adjusted models of respondents who completed the early pandemic survey, respondents with more fear of COVID-19 had a higher mean psychological distress score (10.21; 95% CI 9.38-11.03) compared to respondents with less fear (7.55; 95% CI 6.75-8.36). Among those who completed the later pandemic survey, median fear of COVID-19 decreased (20 vs 19)median distress scores remained the same (8); respondents with more fear of COVID-19 had a higher mean psychological distress score (9.98; 95%CI 9.04-10.92) compared to respondents with less fear (7.87; 95%CI 6.98-8.76). Conclusions: Fear of COVID-19 was linked to psychological distress and persisted throughout the pandemic among under-resourced patients with cancer. Timely psychosocial support is critical to meet increased care needs experienced by patients with cancer during the COVID-19 pandemic. Given these results, fear of COVID-19 could be considered as a trigger to integrate psychological interventions in patients with cancer to treat psychological distress.

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‘It gets into your head as well as your body’: The experiences of patients with cancer during oncology treatment with curative intent

Journal of Health Psychology ◽

10.1177/1359105316671185 ◽

2016 ◽

Vol 23 (1) ◽

pp. 3-16 ◽

Cited By ~ 3

Author(s):

Bruno E Aldaz ◽

Gareth J Treharne ◽

Robert G Knight ◽

Tamlin S Conner ◽

David Perez

Keyword(s):

Interpretative Phenomenological Analysis ◽

Psychosocial Support ◽

Well Being ◽

New Order ◽

Structured Interviews ◽

Curative Intent ◽

Role Changes ◽

Psychosocial Experiences ◽

Patients With Cancer ◽

Oncology Treatment

This study explored the psychosocial experiences of patients with cancer during the course of oncology treatment with curative intent. Our aim was to gather in-depth insights into the shared elements of oncology treatment across a range of cancer types. A total of 10 individuals undergoing oncology treatment participated in semi-structured interviews. Six themes were identified using interpretative phenomenological analysis: diminished well-being, perceived role changes in intimate relationships, heightened awareness of limited time, a new order of priorities, taking things as they come and development of trust in health professionals. These themes indicate relevant areas of patients’ well-being, which might be enhanced through psychosocial support services.

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Development and Evaluation of a Digital Intervention for Fulfilling the Needs of Older Migrant Patients With Cancer: User-Centered Design Approach (Preprint)

10.2196/preprints.21238 ◽

2020 ◽

Author(s):

Hande Sungur ◽

Nida Gizem Yılmaz ◽

Brittany Ming Chu Chan ◽

Maria E T C van den Muijsenbergh ◽

Julia C M van Weert ◽

...

Keyword(s):

Health Care ◽

Clinical Trials ◽

Patient Education ◽

Patient Participation ◽

Health Care Professionals ◽

Psychosocial Support ◽

Mother Tongue ◽

Patient Rights ◽

Ease Of Use ◽

Patients With Cancer

BACKGROUND Older migrant patients with cancer face many language- and culture-related barriers to patient participation during medical consultations. To bridge these barriers, an eHealth tool called Health Communicator was developed in the Netherlands. Essentially used as a digital translator that can collect medical history information from patients, the Health Communicator did not include an oncological module so far, despite the fact that the prevalence of Dutch migrant patients with cancer is rising. OBJECTIVE This study aims to systematically develop, implement, and conduct a pilot evaluation of an oncological module that can be integrated into the Health Communicator to stimulate patient participation among older Turkish-Dutch and Moroccan-Dutch patients with cancer. METHODS The Spiral Technology Action Research model, which incorporates 5 cycles that engage key stakeholders in intervention development, was used as a framework. The listen phase consisted of a needs assessment. The plan phase consisted of developing the content of the oncological module, namely the question prompt lists (QPLs) and scripts for patient education videos. On the basis of pretests in the do phase, 6 audiovisual QPLs on patient rights, treatment, psychosocial support, lifestyle and access to health care services, patient preferences, and clinical trials were created. Additionally, 5 patient education videos were created about patient rights, psychosocial support, clinical trials, and patient-professional communication. In the study phase, the oncological module was pilot-tested among 27 older Turkish-Dutch and Moroccan-Dutch patients with cancer during their consultations. In the act phase, the oncological model was disseminated to practice. RESULTS The patient rights QPL was chosen most often during the pilot testing in the study phase. Patients and health care professionals perceived the QPLs as easy to understand and useful. There was a negative correlation between the tool’s ease of use and patient age. Patients reported that using the module impacted the consultations positively and thought they were more active compared with previous consultations. Health care professionals also found patients to be more active than usual. Health care professionals asked significantly more questions than patients during consultations. Patients requested to see the patients’ rights video most often. Patients rated the videos as easy to understand, useful, and informative. Most of the patients wanted to use the tool in the future. CONCLUSIONS Older migrant patients with cancer, survivors, and health care professionals found the oncological module to be a useful tool and have shown intentions to incorporate it into future consultation sessions. Both QPLs and videos were evaluated positively, the latter indicating that the use of narratives to inform older, low-literate migrant patients with cancer about health-related topics in their mother tongue is a viable approach to increase the effectiveness of health care communication with this target group.

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Development and Evaluation of a Digital Intervention for Fulfilling the Needs of Older Migrant Patients With Cancer: User-Centered Design Approach

Journal of Medical Internet Research ◽

10.2196/21238 ◽

2020 ◽

Vol 22 (10) ◽

pp. e21238

Author(s):

Hande Sungur ◽

Nida Gizem Yılmaz ◽

Brittany Ming Chu Chan ◽

Maria E T C van den Muijsenbergh ◽

Julia C M van Weert ◽

...

Keyword(s):

Health Care ◽

Clinical Trials ◽

Patient Education ◽

Patient Participation ◽

Health Care Professionals ◽

Psychosocial Support ◽

Mother Tongue ◽

Patient Rights ◽

Study Phase ◽

Patients With Cancer

Background Older migrant patients with cancer face many language- and culture-related barriers to patient participation during medical consultations. To bridge these barriers, an eHealth tool called Health Communicator was developed in the Netherlands. Essentially used as a digital translator that can collect medical history information from patients, the Health Communicator did not include an oncological module so far, despite the fact that the prevalence of Dutch migrant patients with cancer is rising. Objective This study aims to systematically develop, implement, and conduct a pilot evaluation of an oncological module that can be integrated into the Health Communicator to stimulate patient participation among older Turkish-Dutch and Moroccan-Dutch patients with cancer. Methods The Spiral Technology Action Research model, which incorporates 5 cycles that engage key stakeholders in intervention development, was used as a framework. The listen phase consisted of a needs assessment. The plan phase consisted of developing the content of the oncological module, namely the question prompt lists (QPLs) and scripts for patient education videos. On the basis of pretests in the do phase, 6 audiovisual QPLs on patient rights, treatment, psychosocial support, lifestyle and access to health care services, patient preferences, and clinical trials were created. Additionally, 5 patient education videos were created about patient rights, psychosocial support, clinical trials, and patient-professional communication. In the study phase, the oncological module was pilot-tested among 27 older Turkish-Dutch and Moroccan-Dutch patients with cancer during their consultations. In the act phase, the oncological model was disseminated to practice. Results The patient rights QPL was chosen most often during the pilot testing in the study phase. Patients and health care professionals perceived the QPLs as easy to understand and useful. There was a negative correlation between the tool’s ease of use and patient age. Patients reported that using the module impacted the consultations positively and thought they were more active compared with previous consultations. Health care professionals also found patients to be more active than usual. Health care professionals asked significantly more questions than patients during consultations. Patients requested to see the patients’ rights video most often. Patients rated the videos as easy to understand, useful, and informative. Most of the patients wanted to use the tool in the future. Conclusions Older migrant patients with cancer, survivors, and health care professionals found the oncological module to be a useful tool and have shown intentions to incorporate it into future consultation sessions. Both QPLs and videos were evaluated positively, the latter indicating that the use of narratives to inform older, low-literate migrant patients with cancer about health-related topics in their mother tongue is a viable approach to increase the effectiveness of health care communication with this target group.

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Needs for patients with cancer who have young children.

Journal of Clinical Oncology ◽

10.1200/jco.2018.36.34_suppl.150 ◽

2018 ◽

Vol 36 (34_suppl) ◽

pp. 150-150

Author(s):

Rebekah Kojima ◽

Hiromi Takada ◽

Tetsuhiko Yoshida ◽

Masaki Shimizu ◽

Daisuke Kiuchi ◽

...

Keyword(s):

Young Children ◽

Cancer Patients ◽

Psychosocial Support ◽

Child Rearing ◽

Cancer Center ◽

Patients With Cancer ◽

Psychosocial Support System ◽

Center Hospital ◽

Strongly Agree ◽

Almost All

150 Background: The number of cancer patients has been increasing in Japan. It is estimated that 56,143 parents with 87,017 young children (under 18 years old) are diagnosed with cancer per year in Japan (Inoue, 2015). The aim of this study is to investigate the needs of cancer patients who have young children. Methods: The survey was conducted from February to April 2018 to the cancer patients who have young children treated at the National Cancer Center Hospital with the questionnaires. It was on items about parenting concerns evaluated with the 4-point Likert scale: 1. strongly disagree, 2. slightly disagree, 3. slightly agree, and 4. strongly agree. The items included “cancer notification to their children”, “parental anxieties”, and others. The items were analyzed separately. Results: The respondents were 152 (143 cancer patients (94%) and nine spouses (6%)). Most respondents (92%) agreed the importance of psychosocial support for the children and parents in hospital. The average age of their young children (n = 237) was 9.5 (ages 0 – 17). The result showed that 148 (62%) children were told true parents’ illness. This study also revealed that parents were struggling with the conflict telling their children truth. Most parents wanted to protect children from emotional distresses and were afraid of it or don’t know how to cope with some changes during treatments. Conclusions: The study describes how cancer impacts on parents for child rearing. Almost all of the patients with minor children had been found psychologically distressed. It is necessary to improve an effective psychosocial support system in hospitals for cancer patients with young children based on their needs.

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Psychosocial Care of Adolescent and Young Adult Patients With Cancer and Survivors

Journal of Clinical Oncology ◽

10.1200/jco.2011.39.5467 ◽

2012 ◽

Vol 30 (11) ◽

pp. 1221-1226 ◽

Cited By ~ 226

Author(s):

Brad Zebrack ◽

Sinéad Isaacson

Keyword(s):

Young Adult ◽

Identity Development ◽

Psychosocial Support ◽

Clinical Care ◽

Quality Care ◽

Psychosocial Care ◽

Adolescent And Young Adult ◽

Patients With Cancer ◽

Positive Effects ◽

Future Goals

The delivery of quality care for adolescent and young adult (AYA) patients with cancer and survivors requires an understanding of the unique qualities of this group—the shared norms, attitudes, and beliefs that determine their behavior as well as the unique stresses they face on a day-to-day basis. All AYAs have typical concerns about being comfortable with who they are and who they want to become (identity development, including sexual identity), their bodies (body image), initiating intimate and emotional relationships, separating from parents, and making independent decisions about future goals such as career, higher education, and/or family (autonomy). Yet efforts of AYA patients with cancer and survivors to mature are often confounded by restrictions and limitations placed on them by their disease and treatment. This article promotes understanding of psychosocial challenges faced by AYAs when diagnosed with and treated for cancer. It reviews evidence-based psychosocial support interventions for AYAs with cancer and other life-threatening or chronic diseases, particularly the positive effects of peer support, technology-based interventions, and skill-based interventions. The article concludes with recommendations for clinical care that are intended to promote the ability of AYAs to cope with cancer.

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Psychosocial support for patients with cancer

Journal of Geriatric Oncology ◽

10.1016/j.jgo.2014.09.135 ◽

2014 ◽

Vol 5 ◽

pp. S74

Author(s):

N. Dann ◽

K. Hargreaves ◽

M. Appleby ◽

M. Gosney

Keyword(s):

Psychosocial Support ◽

Patients With Cancer

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When and why should patients with hematologic malignancies see a palliative care specialist?

Hematology ◽

10.1182/asheducation-2015.1.471 ◽

2015 ◽

Vol 2015 (1) ◽

pp. 471-478 ◽

Cited By ~ 52

Author(s):

Thomas W. LeBlanc ◽

Areej El-Jawahri

Keyword(s):

Palliative Care ◽

Randomized Clinical Trials ◽

Psychosocial Support ◽

Treatment Decision ◽

Well Being ◽

Hematologic Malignancies ◽

Care Practice ◽

Care Needs ◽

Early Integration ◽

Patients With Cancer

Abstract Palliative care is a multidisciplinary approach to symptom management, psychosocial support, and assistance in treatment decision-making for patients with serious illness and their families. It emphasizes well-being at any point along the disease trajectory, regardless of prognosis. The term “palliative care” is often incorrectly used as a synonym for end-of-life care, or “hospice care”. However, palliative care does not require a terminal diagnosis or proximity to death, a misconception that we will address in this article. Multiple randomized clinical trials demonstrate the many benefits of early integration of palliative care for patients with cancer, including reductions in symptom burden, improvements in quality-of-life, mood, and overall survival, as well as improved caregiver outcomes. Thus, early concurrent palliative care integrated with cancer-directed care has emerged as a standard-of-care practice for patients with cancer. However, patients with hematologic malignancies rarely utilize palliative care services, despite their many unmet palliative care needs, and are much less likely to use palliative care compared to patients with solid tumors. In this article, we will define “palliative care” and address some common misconceptions regarding its role as part of high-quality care for patients with cancer. We will then review the evidence supporting the integration of palliative care into comprehensive cancer care, discuss perceived barriers to palliative care in hematologic malignancies, and suggest opportunities and triggers for earlier and more frequent palliative care referral in this population.

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