Creating communicative opportunity: The supportive benefits of legacy building for families of advanced cancer patients.

2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 230-230
Author(s):  
Jennifer Kim Bernat ◽  
Paul R. Helft ◽  
Laura R. Wilhelm ◽  
Karen Schmidt ◽  
Shelley A. Johns
Keyword(s):  
Cancer Patients ◽  
Advanced Cancer ◽  
Family Members ◽  
Terminally Ill ◽  
Future Generations ◽  
Future Research ◽  
Advanced Cancer Patients ◽  
Great Loss ◽  
The Family ◽  
New Knowledge

230 Background: Being diagnosed with advanced cancer is a painful reality that impacts entire families. Families face the challenge of great loss and can regret conversations left unspoken. Dignity therapy (DT) is an empirically supported intervention that gives families communicative opportunity. During DT, terminally ill patients engage in legacy building and create a written project containing their meaningful memories and values. This project is given to the family, succeeding the person in death and providing continuity to those who are left behind. We developed a narrative intervention based on DT that used a novel web portal for project dissemination. This study qualitatively explores the family’s reactions to legacy building to learn about its potential for future bereavement support. Methods: Semi-structured phone interviews (20-30 minutes) with family members (n=7) of terminally ill cancer patients were completed approximately one week after receiving the legacy project. Recipients were spouses (n=4), siblings (n=2), or an adult child (n=1). Interviews were coded using conventional content analysis and an open-coding strategy. Themes were recorded as they emerged. Results: Three communication themes emerged from the data. Legacy building: (1) facilitates conversation; (2) creates new knowledge and understanding; and (3) leaves lasting communication for future generations. The family members felt overall communication improved before the patient died, and they were able to discuss the terminal nature of their loved one’s illness. New knowledge was communicated in the project, which sometimes led to further understanding of personal life events. Also, the project was viewed as a family heirloom to be bequeathed to future generations. All family members stated they would recommend legacy building to others. Conclusions: This study adds the unique impact of communication to the literature on the supportive benefit of DT for families of advanced cancer patients. Future research should investigate and quantitatively assess bereavement outcomes for families over time, as well as the direct impact these outcomes have on family members’ quality of life.

Validity and Reliability of the Family Inventory of Needs (FIN): Measuring the Care Needs of Families of Advanced Cancer Patients

1995 ◽  
Vol 3 (2) ◽  
pp. 109-126 ◽  
Author(s):  
Linda J. Kristjanson ◽  
Jan Atwood ◽  
Lesley F. Degner
Keyword(s):  
Construct Validity ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Internal Consistency ◽  
Family Members ◽  
Validity And Reliability ◽  
Alpha Coefficient ◽  
Advanced Cancer Patients ◽  
Care Needs ◽  
The Family

Two studies balanced qualitative and quantitative data to provide evidence of satisfactory validity and reliability of the Family Inventory of Needs (FIN). The FIN is designed to measure the importance of care needs of families of advanced cancer patients (FIN-Importance of Care Needs subscale) and the extent to which families perceive that their care needs have been met (FINFulfillment of Care Needs subscale). The first study involved development of the instrument and testing for clarity, apparent internal consistency (nonquantitative assessment of homogeneity of content), and content validity using a panel of six experts (family members of advanced cancer patients). The FIN met or exceeded the preset criteria specified used in this phase of testing. The second study of the project used 109 family members of advanced cancer patients from three hospice programs to test the FIN for internal consistency and construct validity. Internal consistency of the FIN-Importance of Care Needs subscale as measured by Cronbach’s alpha coefficient was .83 without redundancy. Construct analysis was assessed using factor analysis techniques. An inability to extract a substantively meaningful minimum number of factors, together with the fact that a theta reliability coefficient of .85 was obtained (only .02 higher than the alpha coefficient), suggested that the items were parallel supporting the conclusion that the subscale is unidimensional. Support for the construct validity of the FINImportance of Care Needs subscale was also obtained using predictive modeling. The internal structure of the FIN-Fulfillment of Care Needs subscale was assessed using cluster analysis. Results suggested that the subscale is a unidimensional one. Overall, the FIN met the preset reliability and validity criteria providing promising evidence for the instrument’s sound psychometric properties for use in research and clinical settings.

Preferred lifestyle upon advanced cancer diagnosis: Comparison of perspectives of advanced cancer patients, family members, and physicians in Japan.

2014 ◽  
Vol 32 (15_suppl) ◽  
pp. e20559-e20559
Author(s):  
Mioko Ikushima ◽  
Jiichiro Sasaki ◽  
Seigo Nakamura ◽  
Naomi Sakurai ◽  
Michiko Oki ◽  
...  
Keyword(s):  
Cancer Patients ◽  
Advanced Cancer ◽  
Cancer Diagnosis ◽  
Family Members ◽  
Advanced Cancer Patients ◽  
Comparison Of Perspectives

Do spiritual patients want spiritual interventions?: A qualitative exploration of underserved cancer patients' perspectives on religion and spirituality

2013 ◽  
Vol 13 (1) ◽  
pp. 19-25 ◽  
Author(s):  
Emma M. Stein ◽  
Evelyn Kolidas ◽  
Alyson Moadel
Keyword(s):  
Cancer Patients ◽  
Advanced Cancer ◽  
Ethnically Diverse ◽  
Psychosocial Interventions ◽  
Future Research ◽  
Diverse Population ◽  
Spiritual Support ◽  
Religion And Spirituality ◽  
Advanced Cancer Patients ◽  
Coping With Cancer

AbstractObjective:This study examines religion and spirituality among advanced cancer patients from an underserved, ethnically-diverse population by exploring patient conceptualizations of religion and spirituality, the role of religion and spirituality in coping with cancer, and patient interest in spiritual support.Method:Qualitative semi-structured interviews were conducted with patients who had participated in a study of a “mind-body” support group for patients with all cancer types. Analysis based on grounded theory was utilized to identify themes and theoretical constructs.Results:With regard to patient conceptualizations of religion and spirituality, three categories emerged: (1) Spirituality is intertwined with organized religion; (2) Religion is one manifestation of the broader construct of spirituality; (3) Religion and spirituality are completely independent, with spirituality being desirable and religion not. Religion and spirituality played a central role in patients' coping with cancer, providing comfort, hope, and meaning. Patients diverged when it came to spiritual support, with some enthusiastic about interventions incorporating their spiritual values and others stating that they already get this support through religious communities.Significance of results:Spirituality plays a central role in the cancer experience of this underserved ethnically-diverse population. While spirituality seems to be a universal concern in advanced cancer patients, the meaning of spirituality differs across individuals, with some equating it with organized religion and others taking a more individualized approach. It is important that psychosocial interventions are developed to address this concern. Future research is needed to further explore the different ways that patients conceptualize spirituality and to develop spiritually-based treatments that are not “one size fits all.”

Management of Fatigue in Palliative Care Settings

2014 ◽  
pp. 81-88
Author(s):  
William S. Breitbart
Keyword(s):  
Palliative Care ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Terminally Ill ◽  
Contributing Factors ◽  
Advanced Cancer Patients ◽  
Comprehensive Overview ◽  
Patients Experience

Fatigue is highly prevalent in palliative care settings. Studies suggest that as many as 60% to 90% of advanced cancer patients experience fatigue. Fatigue is frequently under-recognized and undertreated in the terminally ill. This chapter provides a comprehensive overview of the prevalence of fatigue in palliative care settings, instruments used in screening and assessment of fatigue, common contributing factors of fatigue in advanced cancer patients, and the most recent evidence on the strategies for management of fatigue in palliative care settings.

scholarly journals Views of advanced cancer patients, families, and oncologists on initiating and engaging in advance care planning: a qualitative study

2020 ◽  
Vol 19 (1) ◽  
Author(s):  
J. T. Toguri ◽  
L. Grant-Nunn ◽  
R. Urquhart
Keyword(s):  
Cancer Patients ◽  
Advanced Cancer ◽  
Advance Care Planning ◽  
Family Members ◽  
Formal Training ◽  
Team Approach ◽  
Care Planning ◽  
Advanced Cancer Patients ◽  
Advance Care ◽  
Services And Supports

Abstract Background Advance care planning (ACP) is a process by which patients reflect upon their goals, values and beliefs to allow them to make decisions about their future medical treatment that align with their goals and values, improving patient-centered care. Despite this, ACP is underutilized and is reported as one of the most difficult processes of oncology. We sought to: 1) explore patients’ and families’ understanding, experience and reflections on ACP, as well as what they need from their physicians during the process; 2) explore physicians’ views of ACP, including their experiences with initiating ACP and views on ACP training. Methods This was a qualitative descriptive study in Nova Scotia, Canada with oncologists, advanced cancer out-patients and their family members. Semi-structured interviews with advanced cancer out-patients and their family members (n = 4 patients, 4 family members) and oncologists (n = 10) were conducted; each participant was recruited separately. Data were analyzed using constant comparative analysis, which entailed coding, categorizing, and identifying themes recurrent across the datasets. Results Themes were identified from the patient / family and oncologist groups, four and five respectively. Themes from patients / families included: 1) positive attitudes towards ACP; 2) healthcare professionals (HCPs) lack an understanding of patients’ and families’ informational needs during the ACP process; 3) limited access to services and supports; and 4) poor communication between HCPs. Themes from oncologists included: 1) initiation of ACP discussions; 2) navigating patient-family dynamics; 3) limited formal training in ACP; 4) ACP requires a team approach; and 5) lack of coordinated systems hinders ACP. Conclusions Stakeholders believe ACP for advanced cancer patients is important. Patients and families desire earlier and more in-depth discussion of ACP, additional services and supports, and improved communication between their HCPs. In the absence of formal training or guidance, oncologists have used clinical acumen to initiate ACP and a collaborative healthcare team approach.

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