Experiences of Family Caregivers of Cancer Patients Receiving Chemotherapy

Background: Cancer is a disease which affects not only patients but also their families physically and emotionally. The purpose of this study was to determine the needs, challenges and ways of coping of caregivers of cancer patients. Materials and Methods: In the study, a phenomenological approach was used. Data were collected through semi-structured individual interviews. The study sample comprised 16 family members providing care for a cancer patient. Results: The study findings are grouped under four main themes: the impact of caregiving, masking feelings, experienced challenges and expectations, and coping. During the caregiving process, patient relatives are affected physiologically, psychologically and socially. It was determined that patient relatives hid their feelings and avoided talking about the disease for fear that they might upset the patient, and that they had difficulty in coping with the patient’s reactions during the treatment process. Family members had difficulties arising from the health system, hospital conditions and treatment in addition to ransportation and financial problems. Support is very important in coping, but it was determined that some of the relatives of patients did not receive adequate support. Patient relatives expect that health care professionals should provide them with more information about their patient’s condition and the course of the disease that their patients should be dealt with by the physicians specialized in cancer, and that psychological support should be provided both for them and for their patient. Conclusions: During the caregiving process, family members are faced with many difficulties and they exhibit different coping behaviors which health care professionals should take into account.     

Using Geriatric Assessment Strategies to Lead End-of-Life Care Discussions

End-of-life discussions with geriatric oncology patients are a vital part of the comprehensive care of the senior adult patient. Developing a roadmap for these conversations can be challenging. Patients and caregivers may have expectations that are not concordant with what is reasonably achievable if the patient is frail. Measuring baseline cognition, nutritional status, and physical function and discussing goals of care are all essential pieces of information that can be obtained through a comprehensive geriatric assessment (CGA). Objective findings from the CGA can be crucial in developing end-of-life care plans that reflect both the patient’s health status and personal values.     

中晚期乳腺癌患者家属负性情绪及压力及照护能力的调查分析

目的探讨中晚期乳腺癌患者家属的负性情绪、压力及照护能力。方法选取2015年4月至2019年12月间陕西省肿瘤医院收治的160例乳腺癌患者家属,采用焦虑、抑郁自评量表、照顾者压力量表(CBI)及自制照护能力量表对家属进行调查,分析家属一般资料对上述结果的影响。结果家属的文化程度和家庭平均月收入与其焦虑和抑郁评分有关;家庭平均月收入与压力评分有关;家属性别、家属角色和年龄与照护能力评分有关,差异均有统计学意义(均P <0.05)。文化程度高中是家属焦虑的保护因素,家庭收入<5 000元是焦虑的影响因素,差异均有统计学意义(均P <0.05)。文化程度高中、文化程度大专或以上和家庭收入10 000元以上是家属抑郁的保护因素,差异均有统计学意义(均P <0.05)。家庭平均月收入各项均不属于压力评分的影响因素,差异均有统计学意义(均P> 0.05)。性别女、与患者关系为子女或父母和年龄> 45岁是照护评分的影响因素,年龄18~30岁是保护因素,差异均有统计学意义(均P <0.05)。结论影响中晚期乳腺癌患者家属负性情绪、压力及照护能力的因素均不同,临床不仅要关注患者负性情绪、压力及对家属还需进行相应护理干预,避免家属将压力及负面情绪在照护患者期间爆发,影响患者。     

Helping patients and their family caregivers cope with cancer

Family caregivers face multiple demands as they care for their loved ones with cancer, and these demands have increased dramatically in recent years. Patients with cancer now receive toxic treatments in outpatient settings and return home to the care of their family members. Some patients receive in-home infusions, which were unheard of a few years ago. Family caregivers provide tasks that were previously provided by nurses; however, caregivers lack the educational preparation that nurses receive.     

Factors influencing family involvement in treatment decision-making for older patients with cancer: A scoping review

Many older patients with cancer depend on their family members for care and support and involve their family members in treatment decision-making in different stages of the cancer trajectory. Although family involvement is advocated in person-centered care, little is known about family involvement in decision-making specifically for older patients, and evidence-based strategies are scarce. The aim of this scoping review is to provide deeper understanding of factors influencing family involvement in treatment decision-making for older patients with cancer. Four databases were searched for quantitative-, qualitative- and mixed-method empirical studies describing factors influencing family involvement in treatment decision-making for older patients with cancer: PubMed, EMBASE, CINAHL and PsycINFO. Three independent researchers reviewed the papers for eligibility and quality and contributed to the data extraction and analysis. Twenty-seven papers were included, sixteen quantitative studies, nine qualitative studies and two mixed-method studies. Five categories of factors influencing family involvement emerged: 1) patient characteristics, 2) family member characteristics, 3) family system characteristics, 4) physician's role and 5) cultural influences. These factors affect the level of family control in decision-making, treatment choice, decision agreement, and levels of stress and coping strategies of patients and family members. This review reveals a complex interplay of factors influencing family involvement in treatment decision-making for older patients with cancer that is rooted in characteristics of the family system. The findings underscore the need for development and implementation of evidence-based strategies for family involvement in treatment decision-making as part of patient-centered care for older patients with cancer.     

Family caregivers’ perspectives on communication with cancer care providers

Abstract

Purpose/Objectives: Family caregivers of individuals living with cancer are often highly involved in communication with healthcare teams, yet little is known about their experiences, needs, and preferences in this role. To address this gap in the knowledge base, researchers sought to explore family caregivers’ perspectives on communication with oncology care providers.

Design and Methods: Researchers conducted a secondary inductive thematic analysis of qualitative interviews originally collected as part of a randomized clinical trial of a supportive intervention for family caregivers of patients with cancer (N?=?63).

Participants: Participants were family caregivers of adult patients with cancer. Most were patients’ spouses/long-term partners (52.3%) or adult children/grandchildren (29.2%). Caregivers of patients with all cancer types and stages of disease progression were eligible for study enrollment.

Findings: Caregivers valued communication with healthcare providers who were attentive, genuine, broadly focused on patients and caregivers’ experiences, sensitive to unmet information needs, and responsive to the potentially different communication preferences of patients and caregivers.

Interpretation: Family caregivers expressed a strong preference for person-centered communication, conceptualized as communication that helps healthcare providers meet the needs of patients and caregivers both as individuals and as an interdependent unit of care, and that acknowledges individuals’ experiences beyond their prescribed roles of “cancer patient” and “caregiver.”

Implications for Psychosocial Oncology Practice: Psychosocial oncology providers’ strong orientation to the biopsychosocial and spiritual aspects of cancer care delivery make them uniquely positioned to support family caregivers. Findings suggest that providers should explicitly communicate their commitment to both patient and family care, involve family caregivers in psychosocial assessment activities and subsequent intervention, and strive to honor patients and caregivers’ potentially different communication preferences.     

Family members' experiences, information needs and information seeking in relation to living with a patient with oesophageal cancer

A qualitative study was conducted with the aim to describe family members' experiences, information needs and information seeking in relation to living with a patient suffering from oesophageal cancer. Data were collected by means of semi-structured interviews with nine family members. A content analysis was used in order to organize data. It was found that family members were not aware of the severe diagnosis and the illness caused intrusions on the family. The time following diagnosis family members' information seeking was low. They used interpersonal as well as mass media sources to obtain knowledge about and handle the uncertainty related to the illness. Some family members did not actively seek information. In conclusion, healthcare professionals are expected to improve quality of cancer care. These improvements are unlikely to occur without an understanding of family members' needs. This study shows that the family members were unprepared of receiving a diagnosis of oesophageal cancer. They emphasized the importance of including the children in the care given. Moreover, the whole family was faced with uncertainty, which led to intrusion on everyday life. Therefore, family members used different strategies for managing the uncertainty, whereof one was searching for information. The primary source of information was the physician.     

When does the responsibility of our care end: bereavement

Shortly before his death in 1995, Kenneth B. Schwartz, a cancer patient at Massachusetts General Hospital, founded the Kenneth B. Schwartz Center. The Schwartz Center is a non-profit organization dedicated to supporting and advancing compassionate health care delivery, which provides hope to the patient, support to caregivers, and sustenance to the healing process. The center sponsors the Schwartz Center Rounds, a monthly multidisciplinary forum where caregivers reflect on important psychosocial issues faced by patients, their families, and their caregivers, and gain insight and support from fellow staff members. Two vignettes are presented of a caregiver's response to the death of a patient, contrasting the extremes of involved compassion for the family and fractured relationships. Grief for loss is an inevitable part of life and a common part of cancer care. Support of the bereaved may be one of the hardest tasks for cancer care professionals, who are confronted with the limits of modern medicine. There is a responsibility to provide grieving families with support and care; care that goes beyond the death. A compassionate response helps both those who suffer and those who care. Complicated and uncomplicated bereavement, grief reactions, resources for bereavement counseling, and the role of condolence letters are reviewed.     

Psychosocial aspects of cancer in adults: implications for teaching medical students

This article addresses psychosocial aspects of cancer and the cancer patient that the authors feel are important to teach medical students. A section on understanding the cancer patient deals with patient psychosocial responses to a diagnosis of cancer. Loss of control, anger and guilt, fear of abandonment, fear of pain, psychiatric disorders, and psychosocial factors all need to be explored by the health care team. Interventions, such as education, support groups, environmental manipulation, or psychological counseling including imagery or relaxation have proved to be effective. Relaxation therapy can also help to counteract the side effects of chemotherapy such as anticipatory nausea and vomiting. An increasing openness about discussing dying and the development of hospices have resulted in improvements of the care of the dying patient and family. Family members should be involved in the care of the cancer patient and can support the patient by promoting autonomy and control and by encouraging communication and expression of feelings. The doctor-patient relationship is central, and is changing from a paternalistic model to one encouraging greater patient participation. In studying the behavior of physicians at Albany Medical College, the authors found that oncologists spend more time with patients with the poorest prognoses. Patient satisfaction with the relationship was found to be high. Students can be instructed in these psychosocial aspects of oncology by means of videotapes, role-playing, or patient presentations, and more importantly by using the physicians as a role model. Comprehensive care of the cancer patient necessitates the integration of psychosocial aspects of care into the overall assessment and management plan. This article reviews the psychosocial aspects of care of the adult cancer patient taught to second year medical students as part of a 42 hour course entitled "The Cellular Basis of Cancer Medicine" at Albany Medical College. The didactic material covered in this article is based on local clinical work and research endeavors with adult cancer patients and is included in the course syllabus given to the students. The students are divided into four small groups, each of which has one of four teaching experiences, each lasting for 2 hours. The psychosocial aspects of cancer is one of the small groups. This group, consisting of 32 students each, is taught by a medical oncologist and a behavioral scientist. Videotapes of interviews done with patients and/or live interviews with patients are used to highlight the material covered in the syllabus.(ABSTRACT TRUNCATED AT 400 WORDS)     

A qualitative study of factors affecting chemotherapy use in older women with breast cancer: barriers, promoters, and implications for intervention

STUDY OBJECTIVE: The incidence of breast cancer increases with advancing age and yet women 65 and older (hereinafter referred to as 'older' women) do not always receive the most intensive treatments, such as adjuvant chemotherapy. The causes of underutilization of chemotherapy in this age group are poorly delineated. The purpose of the study was to explore older breast cancer patients' attitudes towards chemotherapy and factors that influenced their decisions to use or not use this treatment modality. DESIGN: Qualitative methods were used to conduct race/ethnicity-specific focus groups. A thematic analysis was performed using NVIVO. SETTING AND PARTICIPANTS: Drawn from the Washington, DC area, participants were 34 ethnically diverse older breast cancer survivors (18 Caucasians, 10 African-Americans, and 6 Latinas). Focus groups were conducted in a local church; a senior center, and the Lombardi Cancer Center. MAIN RESULTS: Results showed that many women felt they had no 'choice' and did what the doctor told them to do. For those who reported participation in the decision, time spent exchanging information with the woman's physician and the inclusion of family members promoted perceptions of optimum decision-making leading to the use of chemotherapy. Two barriers to using chemotherapy were negative expectations about side effects and lack of information specific to the woman's individuals' circumstances. Women of color reported less physician communication and information, in part due to language difficulties and perceived bias; these factors acted as barriers to chemotherapy. CONCLUSION: Physicians could provide specific and limited information to patients and family members to promote realistic expectations and optimum decisions about chemotherapy, given the risks involved in this treatment modality. Interventions should be developed and tested to enhance communication that is sensitive to older women's culture, family structure, illness experiences, preferences, and expectations.     

Caring for patients with oral cancer in Taiwan: The challenges faced by family caregivers

Family caregivers face multiple challenges when caring for patients with oral cancer at home. Understanding the difficulties they face may assist health professionals to better organise and provide support for family caregivers of oral cancer patients. The aim of this study was to describe the caregivers’ primary tasks and the difficulties they encounter when caring for a family member with oral cancer. This qualitative study included a purposeful sample of 22 primary family caregivers ranging in age from 25 to 71 years old. The researchers used face‐to‐face, semi‐structured and tape‐recorded interviews to collect data and employed qualitative content analysis to elicit caregiving‐related themes. Six task‐related themes and associated challenges were identified. These included managing the patient's nutritional issues, investigating and making decisions about patient care, managing sudden and unpredictable changes in the patient's condition, managing emotional distress, adjusting their attitudes towards patient care, and seeking resources. Family caregivers handle such essential tasks when they care for patients in home settings and they face specific challenges related to them. This study identified several challenges related to each task. From the outset, healthcare providers should actively offer caregiving information and strategies. Health professionals can incorporate strategies for supporting caregivers’ ability to carry out these tasks into their treatment model and can help caregivers manage difficulties that can impede them from doing so.     

Cultural diversity: family path through terminal illness

In trying to comprehend a culture and its ways of structuring the world, much can be learned from addressing the manner in which intimate family relationships are ordered and family crises channeled toward care. A family's experience with illness cannot be considered in isolation from the cultural milieu in which it occurs. Family adaptation to cancer diagnosis is a continuous motion between many critical strata--a fragile oscillation between hope and desperation. Processes for optimal functioning and the well-being of members are seen to vary over time, as challenges unfold and families evolve across the life cycle and illness trajectory. The manner in which the healthcare system and family manage illness and terminal care is a particularly helpful window into the cultural, religious and traditional values of every family in a particular society.     

Family and caregiver needs over the course of the cancer trajectory

When a patient is diagnosed with cancer, family members often assume responsibility for providing care. They are typically involved not only with the diagnostic and treatment phases of care but also across the care trajectory and into survivorship. These caregivers are a primary source of support to individuals with cancer. The purpose of this article is to present an overview of the challenges, needs, and roles of family caregivers over the course of the cancer treatment trajectory and to discuss what support the professionals can provide. Caregivers require support, coordination, and communication with health care providers if they are to be successful in carrying out tasks of care. Concern for caregivers as partners in patient care and caregiver outcomes deserves attention from health care professionals. Considering the caregivers' value to the health care team, this role should not be underestimated.     

Families of long-term cancer survivors: health maintenance advocacy and practice

Research on cancer and aging has addressed health maintenance issues for older adults in long-term cancer survivorship, but not their family members. The current study focused on two aspects of health maintenance for families: advocacy and practice. Regression analyses explored the effects of demographic characteristics and perceptions during diagnoses and treatments on family members' health maintenance in long-term survivorship. Family members were acting as health maintenance advocates for their surviving relatives. Advocacy was related to being a caregiver during diagnosis and treatment. In terms of their own health, family members were practicing a high number of health maintenance activities. Practice was associated with being a caregiver during diagnosis and treatment and with being older and White. Implications for interventions and future research with family members are discussed.     

Increased cancer risk for individuals with a family history of prostate cancer,colorectal cancer,and melanoma and their associated screening recommendations and practices

Prostate cancer, colorectal cancer, and melanoma are three malignancies that appear to have strong genetic components that can confer additional risk to family members. Screening tools, albeit controversial, are widely available to potentially aide in early diagnosis. Family members are now more attuned to the risks and benefits of cancer screening, thus, it is imperative that physicians understand the screening tools and how to interpret the information they provide. We reviewed the current literature regarding the cancer risks for individuals with a family history of prostate cancer, colon cancer, and melanoma, the current screening recommendations for family members, and actual screening practices of individuals with a family history of these malignancies. This review should serve as a guide for physicians and cancer control planners when advising their patients and the public regarding screening decisions.