Cancer Illness Trajectory Research Articles

Factors for Consideration for Hematological Cancer Patients When Planning for Place of Death: A Constructive Grounded Theory Study.

Planning for place of death is considered troublesome for patients with hematological cancer. Qualitative studies have focused on healthcare professionals and caregivers. To date, no study has been conducted from the patient's perspective of planning for place of death in the last year of life. To develop an understanding of how patients with hematological cancer experience planning for place of death in their last year of life. The study used constructivist grounded theory, semistructured interviews, a constant comparison technique, and memoing to collect and analyze data. The 21 participants were attending a cancer center, cancer unit, or hospice in the United Kingdom. This article describes one core category, factors influencing planning for death, within the incurable hematology cancer illness trajectory through the following 2 subcategories: personal factors-driving away, developing a legacy, designing a death plan, and disease determining; and environmental factors-dependent determination, displacement of the home, and discernment of services. This critical study illustrates that planning for place of death is complex and multifaceted in conjunction with an unpredictable incurable illness trajectory. Preferences for the place of death will change over time depending on the illness trajectory experienced by patients with hematological cancer and the level of physical and emotional energy and independence afforded to discuss and plan.

Scoping review protocol of post-traumatic growth (PTG) in Korean cancer survivors

IntroductionCancer, a life-threatening chronic disease, is the leading cause of death in Korea, accounting for 27% of all deaths in 2020. Due to advancements in medical technology and early detection...

The Hematology Cancer Patient Experience of "Facing Death" in the Last Year of Life: A Constructivist Grounded Theory Study.

For hematology cancer patients, the process of dying is described as "troublesome." Qualitative studies have focused on views of healthcare professionals and caregiver stakeholders. To date, there have been no studies from the patient's perspective on facing death while in the last year of life. The aim of this study was to develop an understanding of the hematology cancer patient's experience of the process of dying in the last year of life. The study method was constructivist grounded theory using semistructured interviews, a constant comparison technique, and memoing to collection and analysis of data. The 21 participants were attending a UK cancer center, a cancer unit, or a hospice. This article describes 1 core category within the incurable hematology cancer illness trajectory through 4 subcategories: transitional phase, chronic phase, dying phase, and liminal phase. This unique study illustrates that, although life can be prolonged, "facing death" still occurs upon hospitalization and relapse regularly over the illness trajectory. It is important that clinical practice acknowledges those participants in an incurable illness trajectory while living are focused on avoiding death rather than the ability to cure the disease. Services need to be responsive to the ambiguity of both living and dying by providing holistic management simultaneously, especially after critical episodes of care, to enhance the process of care in the last year of life, and assessment should incorporate the discussion of experiencing life-threatening events.

"I'm Dealing With That": Illness Concerns of African American and White Cancer Patients While Undergoing Active Cancer Treatments.

National oncology guidelines recommend early integration of palliative care for patients with cancer. However, drivers for this integration remain understudied. Understanding illness concerns at the time of cancer treatment may help facilitate integration earlier in the cancer illness trajectory. To describe cancer patients' concerns while undergoing cancer treatment, and determine if concerns differ among African Americans and Whites. A 1-time, semi-structured qualitative interview was conducted with a purposive subsample of cancer patients participating in a larger study of illness concerns. Eligible patients were undergoing cancer treatments and had self-reported moderate-to-severe pain in the last week. Analysis encompassed a qualitative descriptive approach with inductive thematic analysis. Participants (16 African American, 16 White) had a median age of 53 and were predominantly females (72%) with stage III/IV cancer (53%). Illness concerns were largely consistent across participants and converged on 3 themes: symptom experience (pain, options to manage pain), cancer care delivery (communication, care coordination and care transitions), and practical concerns (access to community and health system resources, financial toxicity). The findings extend the scope of factors that could be utilized to integrate palliative care earlier in the cancer illness trajectory, moving beyond the symptoms- and prognosis-based triggers that typify current referrals to also consider diverse logistical concerns. Using this larger set of concerns aids anticipatory risk mitigation and planning (e.g. care transitions, financial toxicity), helps patients receive a larger complement of support services, and builds cancer patients' capacity toward a more patient-centered treatment and care experience.

Health Care Provider Perceptions of Caring for Individuals with Inherited Pancreatic Cancer Risk

Recent national guidelines recommend genetic risk assessment for all patients diagnosed with pancreatic cancer, yet individuals with pancreatic cancer obtain genetic testing at suboptimal rates. Both patient and provider factors play a role in adherence to genetic testing recommendations. The purpose of this study was to understand health care provider perspectives of caring for patients with inherited pancreatic cancer risk. The study was a cross-sectional mixed method study utilizing a qualitative interview and a survey. The study sample included health care providers who provide care for patients with pancreatic cancer or inherited risk. Qualitative data were analyzed using content analysis, while quantitative data were summarized using descriptive statistics. Thirty participants had complete interview data and 29 completed a survey. The sample was comprised of physicians (n = 17), genetic counselors (n = 6), nurses (n = 3), and social workers (n = 3). Respondents were less confident in their ability to identify patients with inherited pancreatic cancer risk compared with other hereditary cancer syndromes. Several challenges were identified including the pancreatic cancer illness trajectory; lack of evidence-based practice guidelines; difficulty interpreting genetic test results; and difficulty following up on referrals. Participants perceived a lack of educational resources for patients with inherited pancreatic cancer risk. Health care providers who care for individuals with inherited pancreatic cancer risk face challenges that are distinct from those encountered during the care of individuals for other hereditary cancers. There is a need for additional resources at the patient-, provider-, and system-level.

Experiences of Ego Integrity Recovery in Elderly Cancer Patients: Grounded Theory Approach

This study was conducted to derive a substantive theory on lived experiences of elderly cancer patients. The data were collected from February to March 2018 through in-depth personal interviews with 14 elderly cancer patients. The collected data were analyzed based on Corbin and Strauss's grounded theory. The core category was "the journey to find balance in daily lives as a cancer patient by recovering disturbed ego integrity." The core phenomenon was "shattered by suffering from cancer," and the causal conditions were "physical change" and "limitations in daily life." The contextual conditions were "decreased self-esteem," "feelings of guilt toward the family," and the sense of "economic burden." The participants' action and interaction strategies were "maintaining or avoiding social relations," "seeking meaning of the illness," "falling into despair," and "strengthening the willingness to battle the cancer." The intervening conditions were "support from health care providers and family," "dissatisfaction with health care providers," "spiritual help from religion," and "the improvement or worsening of health conditions." The consequences were "having a new insight for life," "living positively along with cancer illness," and "the loss of willingness to live." A summary of the series of processes includes the "crisis stage," "reorganizing stage," and the "ego integration stage." This study explored the holistic process of ego integrity impairment and the recovery experience of elderly cancer patients. This study is expected to be used as a basis for the development of nursing interventions that can support patients when coping with all stages of their cancer illness trajectory.

The Medical Body: Women's Experiences of Sexual Embodiment Across the Cancer Illness Trajectory

ABSTRACTThis study examined women's experiences of sexual embodiment across the cancer illness trajectory. We conducted a thematic decomposition of transcripts from interviews with 16 women (aged 20–71 years) across cancer diagnoses. “The Medical Body” was identified as a main theme. In a dominant narrative, women positioned their bodies as “object” upon contact with the medical system with ongoing problematic sexual subjectivity. In a counternarrative some women constructed their bodies as “subject” during treatment with more positive implications for sexual subjectivity. Findings suggest women's sexual subjectivity is negotiated around institutional discourse and the lived constraints of women's bodies with cancer.

Defining the illness trajectory of metastatic breast cancer

BackgroundWith significant developments in the management of metastatic breast cancer, the trajectory of progressive breast cancer is becoming increasingly complex with little understanding of the illness course experienced by women,...

Quality of Life of Family Caregivers and Challenges Faced in Caring for Patients With Lung Cancer

Family caregivers (FCGs) of patients with lung cancer face multiple challenges that affect their quality of life and well-being. Whether challenged physically, emotionally, socially, or spiritually, distress in one area may compound challenges in other areas. To maintain function and health of FCGs as they provide valuable care for the health and well-being of the patient, attention must be given to the needs of FCGs for support and education. The purpose of this article is to describe the multifaceted challenges that FCGs of patients with lung cancer experience using case studies selected from a National Cancer Institute-funded program project. The cases are discussed in terms of how the FCG's quality of life is impacted by the caregiver role, as well as how stressors in one or more domains of quality of life compound difficulties in coping with the demands of the role. The importance of the oncology nurse's assessment of FCGs' needs for support, education, and self-care through the lung cancer illness trajectory is discussed while presenting accessible community resources to meet those needs.

The meaning and validation of social support networks for close family of persons with advanced cancer

BackgroundTo strengthen the mental well-being of close family of persons newly diagnosed as having cancer, it is necessary to acquire a greater understanding of their experiences of social support networks, so as to better assess what resources are available to them from such networks and what professional measures are required. The main aim of the present study was to explore the meaning of these networks for close family of adult persons in the early stage of treatment for advanced lung or gastrointestinal cancer. An additional aim was to validate the study’s empirical findings by means of the Finfgeld-Connett conceptual model for social support. The intention was to investigate whether these findings were in accordance with previous research in nursing.MethodsSeventeen family members with a relative who 8–14 weeks earlier had been diagnosed as having lung or gastrointestinal cancer were interviewed. The data were subjected to qualitative latent content analysis and validated by means of identifying antecedents and critical attributes.ResultsThe meaning or main attribute of the social support network was expressed by the theme Confirmation through togetherness, based on six subthemes covering emotional and, to a lesser extent, instrumental support. Confirmation through togetherness derived principally from information, understanding, encouragement, involvement and spiritual community. Three subthemes were identified as the antecedents to social support: Need of support, Desire for a deeper relationship with relatives, Network to turn to. Social support involves reciprocal exchange of verbal and non-verbal information provided mainly by lay persons.ConclusionsThe study provides knowledge of the antecedents and attributes of social support networks, particularly from the perspective of close family of adult persons with advanced lung or gastrointestinal cancer. There is a need for measurement instruments that could encourage nurses and other health-care professionals to focus on family members’ personal networks as a way to strengthen their mental health. There is also a need for further clarification of the meaning of social support versus caring during the whole illness trajectory of cancer from the family members’ perspective.

COPD: criteria to assist in the identification of the palliative phase

For people with chronic obstructive pulmonary disease (COPD), hospital admission can be associated with a poor prognosis. Consequently, the end stage of the illness needs to be recognized for timely palliative care to be initiated. Tools to enhance the palliative phase such as the Gold Standards Framework and the Liverpool Care Pathway rely on the recognition of the final phase of a person's life. The illness trajectory of cancer makes this recognition far easier than for COPD, as a result many patients and their families manage at home with limited support. Lincolnshire Respiratory Network has developed criteria to help recognize the end-stage COPD, which correlate well with recent recommendations from the Consultation on a Strategy for Services for COPD in England (Department of Health, 2010). However, there needs to be appropriate training to assist practitioners in their confidence to refer patients with end-stage COPD to palliative care providers.

Developing criteria to assist in the palliative phase of COPD

For people with chronic obstructive pulmonary disease (COPD), hospital admission can be associated with a poor prognosis. Consequently, the end-stage of the illness needs to be recognized for timely palliative care to be initiated. Tools to enhance the palliative phase, such as the Gold Standards Framework and the Liverpool Care Pathway, rely on the recognition of the final phase of a person's life. The illness trajectory of cancer makes this recognition far easier than for COPD, and as a result, many patients and their families manage at home with limited support. The Lincolnshire Respiratory Network has developed criteria to help recognize the end stage of COPD, which correlate well with recommendations from the Consultation on a Strategy for Services for COPD in England (Department of Health, 2010). However, there needs to be appropriate training to assist practitioners in their confidence to refer patients with end-stage COPD to palliative care providers.

Effects of a Problem-Solving Intervention (COPE) on Quality of Life for Patients with Advanced Cancer on Clinical Trials and their Caregivers: Simultaneous Care Educational Intervention (SCEI): Linking Palliation and Clinical Trials

Patients on investigational clinical trials and their caregivers experience poor quality of life (QOL), which declines as the disease progresses. To examine the effect of a standardized cognitive-behavioral problem-solving educational intervention on the QOL of patients enrolled on investigational clinical trials and their caregivers. Prospective, multi-institution, randomized trial. QOL was measured repeatedly over 6 months. Patients were simultaneously enrolled onto phase 1, 2, or 3 Institutional Review Board (IRB)-approved cancer clinical trials. Intervention arm dyads participated in three conjoint educational sessions during the first month, learning the COPE problem solving model. Nonintervention arm dyads received usual care. Global QOL was measured by the City of Hope Quality of Life Instruments for Patients or Caregivers; problem solving skills were measured by the Social Problem Solving Inventory-Revised. The results are reported using the CONSORT statement. The analytic data set included 476 dyads including 1596 patient data points and 1576 care giver data points. Patient QOL showed no significant difference in the rate of change between the intervention and usual care arms (p = 0.70). Caregiver QOL scores in the intervention arm declined, but at less than half the rate in the control arm (p = 0.02). The COPE intervention enabled the average caregiver to come much closer to stable QOL over the 6-month follow-up. Future studies should enroll subjects much earlier in the cancer illness trajectory, a common patient/caregiver theme. The maximum effect was seen in caregivers who completed the 6-month follow-up, suggesting that the impact may increase over time.

“I See My Mother’s Face”: Student nurse experiences caring for cancer patients

Purpose With the numbers of cancer diagnoses increasing annually and the aging of the global citizenry, it is certain that more nurses with expert competencies in cancer care will be needed. Nursing students must have a broad understanding of cancer content in order to provide safe, effective care in the clinical setting as they learn to recognize their own experiences in caring for cancer patients. Experienced nursing educators are aware that student nurses bring into any clinical learning situation their unique knowledge, values, fear, uncertainty and bias. The purpose of this study was to examine the experiences of nursing students caring for cancer patients. Method This descriptive qualitative study included participants who were Junior or Senior Baccalaureate nursing students and had provided care for at least one patient with cancer during clinical experiences. Focus group interviews were transcribed verbatim for analysis and coding using accepted qualitative techniques. Results Data analysis revealed student experiences to be varied in the type of cancer patient experiences. Four prevalent sub-themes emerged regarding student experiences: caring for patients and families, interactions between students and healthcare providers, student experiences with dying patients, and students’ prior experiences with cancer. Further discussion with students revealed a student perspective for strengthening cancer in the curriculum. Conclusion Preparing students to be comfortable with cancer patients across the cancer illness trajectory will provide students with the necessary skills to gain confidence in their cancer patient care.

The Sequelae of Anxiety in Breast Cancer: A Human Response to Illness Model

To provide a critical review of the empirical literature on anxiety in women with breast cancer using the physiologic, pathophysiologic, behavior, and experiential perspectives of the Human Response to Illness (HRTI) Model. Research articles, clinical articles, and Internet sources on breast cancer and anxiety. Literature sources included CINAHL, PubMed, and PsycINFO, incorporating English language reports through March 2009. Patients with breast cancer experience fluctuating levels of anxiety throughout their diagnosis and treatment trajectory. Anxiety may influence an individual's response to treatment, treatment decision making, and overall quality of life. Research consistently demonstrates that anxiety in patients with breast cancer can have a negative effect on patient outcomes. The insight gained from exploring anxiety within the context of the four interrelated perspectives of the HRTI model fosters the provision of optimal care for patients suffering with anxiety throughout their breast cancer illness trajectory.

Bringing Music to Life: A Study of Music Therapy and Palliative Care Experiences in a Cancer Hospital

A music therapy research study aimed at understanding patients’, visitors’ and staff members’ experiences of a music therapy program in a cancer hospital over a three-month period is described. Respondents’ answers to brief open-ended questions, as well as the music therapist researcher's interpretations of the program's relevance, were examined using thematic analysis based on grounded theory. ATLAS.ti software supported data management and analysis. Themes encapsulating 128 patients’ reflections about music therapy were delineated and substantiate how music therapy can support palliative care aims throughout the cancer illness trajectory.

Palliative care: Past, present, and future perspectives

To provide a review of the development and impact of palliative care; to discuss quality of lie as a framework for guiding clinical practice and research in palliative care; and to identify future trends that are likely to affect palliative care services. Research studies, review articles, and book chapters. Palliative care is in the process of dynamic change. Advocates of palliative care are suggesting that cost-effective holistic care strategies should be available to patients and families throughout the illness trajectory, not just reserved for end of life care. Incorporation of palliative care principles across the cancer illness trajectory requires an attitude shift by all members of the multidisciplinary team.

The family??s cancer journey

Cancer is recognized by health professionals as a phenomenon experienced by the entire family, not just by the individual member diagnosed with the disease. This article is based on an examination of approximately 200 clinical papers and research studies written between 1970 and 1991. Four major dimensions of the family cancer experience were identified from the literature: developmental stage of the family, cancer illness trajectory, family responses to cancer, and health care provider behaviors. The most developed body of literature documents the family responses to cancer and health-care provider behaviors directed at these responses. Gaps in research knowledge are identified and directions and recommendations for future research are outlined.

Cancer nursing for the elderly

Using the stages in the cancer illness trajectory as an organizing framework, this article describes information available about the elderly individual with cancer. Areas lacking research and suggestions for proposed nursing research are identified.