Qualitative Study of Patients' and Caregivers' Perceptions and Information Preferences About Hospice

El‐Jawahri, Areej; Traeger, Lara; Shin, Jennifer; Knight, Helen; Mirabeau-Beale, Kristina; Fishbein, Joel N.; VanDusen, Harry; Jackson, Vicki A.; Volandes, Angelo E.; Temel, Jennifer S.

doi:10.1089/jpm.2016.0104

Cited by 34 publications

(36 citation statements)

References 44 publications

(65 reference statements)

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“…Inter‐rater reliability of coding (κ = 0.92) was high. We reached thematic saturation with a sample size of 25 patients (consistent with similar studies (El‐Jawahri et al., 2017; Saunders et al., 2018) at baseline and 21 patients follow‐up.…”

Section: Methodssupporting

confidence: 66%

Beyond depression, anxiety and post‐traumatic stress disorder symptoms: Qualitative study of negative emotional experiences in hematopoietic stem cell transplant patients

et al. 2020

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Hematopoietic stem cell transplantation (HSCT) is a life-saving treatment for many patients with haematologic malignancies (Singh & McGuirk, 2016). Currently, approximately 20,000 HSCTs are performed in the United States annually and the number of transplants is projected to increase (Majhail et al., 2013). Survival following HSCT continues to improve with a decreased burden of physical symptoms and complications that follow the transplant. Psychological well-being is critical to successful recovery from HSCT due to the intense nature of the treatment during hospitalisation and the demands of quarantine and frequent follow-up visits (Mosher, Redd, Rini, Burkhalter, & DuHamel, 2009). Psychological well-being during HSCT recovery is usually threatened by multiple factors including rehospitalisation, graft-versus-host

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Section: Methodssupporting

confidence: 66%

Beyond depression, anxiety and post‐traumatic stress disorder symptoms: Qualitative study of negative emotional experiences in hematopoietic stem cell transplant patients

et al. 2020

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“…The literature search identified 303 articles as potentially relevant, and of these, 120 articles were selected for full-text screening and 48 articles were included in the final analysis. 7,10 -56 The screening process is presented in Figure 1, and the overview of the 48 articles is presented in Table 2.…”

Section: Methodsmentioning

confidence: 99%

Reciprocal Dynamics of Dignity in End-of-Life Care: A Multiperspective Systematic Review of Qualitative and Mixed Methods Research

Choo

Tan-Ho

Dutta

et al. 2019

Am J Hosp Palliat Care

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Background: Preserving terminally ill patients’ dignity and well-being through dignified and holistic care has become the overarching goal in palliative care services. However, dignity is a multifaceted concept with a wide range of interpretations under different cultural contexts. Aim: The aim of this review is to understand the variations in subjective interpretations and constitutions of dignity in palliative or end-of-life care via an integrative worldview. Design: This systematic review adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guideline and used SPIDER tool to screen for appropriate and relevant articles for analysis. Data Sources: Four major databases were searched including CINAHL, ERIC, Medline, and PsycARTICLES between 2009 and 2018. Forty-eight qualitative studies that examined dignity from the perspectives of patients, family caregivers, and health-care professionals were selected for full text data analysis using thematic synthesis. Results: Analysis of the various concepts of dignity revealed 18 themes that were further categorized into 7 conceptual categories: (1) self-determination, (2) existential liberty, (3) relational connectedness, (4) caregiving revitalization, (5) mindful humanity, (6) patient–family care, and (7) sustainable culture. These 7 categories span across individual, familial, and institutional dimensions, forming a new Dynamic Reciprocity of Dignity model. Conclusions: The Dynamic Reciprocity of Dignity model highlights the importance of adopting a systemic lens to address dignity-related needs and concerns at the end of life, while providing insights on how compassionate care and self-compassion can serve as the foundation of dignified care, which in turn serve as a buffer against patients’ existential suffering as well as caregivers’ burnout and fatigue. Recommendations for clinical practice and future research directions are discussed.

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“…29,30 Lack of awareness about hospice care is still a significant barrier to hospice enrollment. 12,[31][32][33][34][35] This lack of understanding may be particularly important when it comes to racial disparities and hospice. 32,34,36,37 This disparity is evidenced by the fact that more than 85% of hospice enrollees are White.…”

Section: Discussionmentioning

confidence: 99%

“…12,[31][32][33][34][35] This lack of understanding may be particularly important when it comes to racial disparities and hospice. 32,34,36,37 This disparity is evidenced by the fact that more than 85% of hospice enrollees are White. This finding confirms the need for educational materials designed to inform patients about hospice and supports the IOM finding that population increases in racial diversity may negatively impact hospice usage.…”

Section: Discussionmentioning

confidence: 99%

“It’s Like a Death Sentence but It Really Isn’t” What Patients and Families Want to Know About Hospice Care When Making End-of-Life Decisions

Tate

Venechuk

Brereton

et al. 2019

Am J Hosp Palliat Care

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Background: Hospice is underutilized, due to both lack of initiation from patients and late referral from clinicians. Prior research has suggested the reasons for underuse are multifactorial, including clinician and patient lack of understanding, misperceptions about the nature of hospice care, and poor communication during end-of-life discussions about hospice care. Little is known about the decisional needs of patients and families engaging in hospice decision-making. Objectives: To understand the decisional needs of patients and families making decisions about hospice care. Methods: We conducted focus groups with family caregivers and hospice providers and one-on-one interviews with patients considering or enrolled in hospice care. We identified participants through purposeful and snowball sampling methods. All interviews were transcribed verbatim and analyzed using a grounded theory approach. Results: Four patients, 32 family caregivers, and 27 hospice providers participated in the study. Four main themes around decisional needs emerged from the interviews and focus groups: (1) What is hospice care?; (2) Why might hospice care be helpful?; (3) Where is hospice care provided?; and (4) How is hospice care paid for? Discussion: Hospice may not be the right treatment choice for all with terminal illness. Our study highlights where patients’ and families’ understanding could be enhanced to assure that they have the opportunity to benefit from hospice, if they so desire.

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Qualitative Study of Patients' and Caregivers' Perceptions and Information Preferences About Hospice

Cited by 34 publications

References 44 publications

Beyond depression, anxiety and post‐traumatic stress disorder symptoms: Qualitative study of negative emotional experiences in hematopoietic stem cell transplant patients

Beyond depression, anxiety and post‐traumatic stress disorder symptoms: Qualitative study of negative emotional experiences in hematopoietic stem cell transplant patients

Reciprocal Dynamics of Dignity in End-of-Life Care: A Multiperspective Systematic Review of Qualitative and Mixed Methods Research

“It’s Like a Death Sentence but It Really Isn’t” What Patients and Families Want to Know About Hospice Care When Making End-of-Life Decisions

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