Costs incurred by family caregivers of patients with palliative care needs

This chapter provides an overview and update of the comprehensive care related to HIV/AIDS and addresses the palliative care needs of individuals and families living with and dying from this illness. With this information, nurses and other health-care professionals will gain the knowledge to provide effective and compassionate care, recognizing the need for both curative and aggressive care as well as supportive and palliative therapies to maximize the quality of life of patients and their family caregivers.

Download Full-text

Cervical Cancer-Associated Suffering: Estimating the Palliative Care Needs of a Highly Vulnerable Population

JCO Global Oncology ◽

10.1200/go.21.00025 ◽

2021 ◽

pp. 862-872

Author(s):

Eric L. Krakauer ◽

Xiaoxiao Kwete ◽

Khadidjatou Kane ◽

Gauhar Afshan ◽

Lisa Bazzett-Matabele ◽

...

Keyword(s):

Cervical Cancer ◽

Palliative Care ◽

Family Caregivers ◽

Financial Distress ◽

Care Needs ◽

Middle Income ◽

Modified Delphi ◽

High Prevalence ◽

Clinically Significant ◽

Palliative Care Needs

PURPOSE To enable design of optimum palliative care for women with cervical cancer, we studied the most common types of suffering and their severity, prevalence, and duration. METHODS We first reviewed the literature on the major types, severity, prevalence, and duration of suffering associated with cervical cancer. We then conducted a modified Delphi process with experts in cervical cancer care to supplement the literature. For each type of suffering, we distinguished between decedents (those who die from cervical cancer in a given year) and nondecedents (those who have cervical cancer in a given year but do not die). By applying the suffering prevalence and duration estimates to the number of decedents, nondecedents, and family caregivers in 2017, we were able to estimate their palliative care needs and the intensity of palliative care needed to respond adequately to this suffering. RESULTS There is a high prevalence among decedents of moderate or severe pain (84%), vaginal discharge (66%), vaginal bleeding (61%), and loss of faith (31%). Among both decedents and nondecedents, there is a high prevalence of clinically significant anxiety (63% and 50%, respectively), depressed mood (52% and 38%, respectively), and sexual dysfunction (87% and 83%, respectively). Moderate or severe financial distress is prevalent among decedents, nondecedents, and family caregivers (84%, 74%, and 66%, respectively). More than 40% of decedents and nondecedents are abandoned by their intimate partners. Most patients experience some combination of moderate or severe physical, psychological, social, and spiritual suffering. In total, 258,649 decedents and 2,558,857 nondecedents needed palliative care in 2017, approximately 85% of whom were in low- and middle-income countries where palliative care is rarely accessible. CONCLUSION Among women with advanced cervical cancer, suffering is highly prevalent and often severe and multifaceted.

Download Full-text

Faculty Opinions recommendation of The palliative care needs of patients with idiopathic pulmonary fibrosis: A qualitative study of patients and family caregivers.

Faculty Opinions – Post-Publication Peer Review of the Biomedical Literature ◽

10.3410/f.727014404.793539211 ◽

2017 ◽

Author(s):

Sergio Harari ◽

Antonella Caminati

Keyword(s):

Palliative Care ◽

Qualitative Study ◽

Idiopathic Pulmonary Fibrosis ◽

Pulmonary Fibrosis ◽

Family Caregivers ◽

Care Needs ◽

Palliative Care Needs

Download Full-text

Supporting the patients with advanced cancer and their family caregivers: what are their palliative care needs?

BMC Cancer ◽

10.1186/s12885-020-07239-9 ◽

2020 ◽

Vol 20 (1) ◽

Author(s):

Gek Phin Chua ◽

Grace Su Yin Pang ◽

Alethlea Chung Pheng Yee ◽

Patricia Soek Hui Neo ◽

Siqin Zhou ◽

...

Keyword(s):

Palliative Care ◽

Family Caregivers ◽

Advanced Cancer ◽

Care Needs ◽

Palliative Care Needs

Download Full-text

The Importance of Early Identifications of Palliative Care Needs in Emergency Wards

10.26226/morressier.5c76c8bde2ea5a7237612860 ◽

2019 ◽

Author(s):

Mia Grillfors Mård

Keyword(s):

Palliative Care ◽

Care Needs ◽

Palliative Care Needs

Download Full-text

What makes palliative care needs “complex”? A multisite sequential explanatory mixed methods study of patients referred for specialist palliative care

BMC Palliative Care ◽

10.1186/s12904-020-00700-3 ◽

2021 ◽

Vol 20 (1) ◽

Cited By ~ 1

Author(s):

Anne M. Finucane ◽

Connie Swenson ◽

John I. MacArtney ◽

Rachel Perry ◽

Hazel Lamberton ◽

...

Keyword(s):

Palliative Care ◽

Focus Groups ◽

Healthcare Professionals ◽

Psychological Needs ◽

Care Providers ◽

Specialist Palliative Care ◽

Care Needs ◽

Complex Needs ◽

Sequential Explanatory ◽

Palliative Care Needs

Abstract Background Specialist palliative care (SPC) providers tend to use the term ‘complex’ to refer to the needs of patients who require SPC. However, little is known about complex needs on first referral to a SPC service. We examined which needs are present and sought the perspectives of healthcare professionals on the complexity of need on referral to a hospice service. Methods Multi-site sequential explanatory mixed method study consisting of a case-note review and focus groups with healthcare professionals in four UK hospices. Results Documentation relating to 239 new patient referrals to hospice was reviewed; and focus groups involving 22 healthcare professionals conducted. Most patients had two or more needs documented on referral (96%); and needs were recorded across two or more domains for 62%. Physical needs were recorded for 91% of patients; psychological needs were recorded for 59%. Spiritual needs were rarely documented. Referral forms were considered limited for capturing complex needs. Referrals were perceived to be influenced by the experience and confidence of the referrer and the local resource available to meet palliative care needs directly. Conclusions Complexity was hard to detail or to objectively define on referral documentation alone. It appeared to be a term used to describe patients whom primary or secondary care providers felt needed SPC knowledge or support to meet their needs. Hospices need to provide greater clarity regarding who should be referred, when and for what purpose. Education and training in palliative care for primary care nurses and doctors and hospital clinicians could reduce the need for referral and help ensure that hospices are available to those most in need of SPC input.

Download Full-text