scholarly journals Palliative Care Comics: Designing a Person-Centered Patient Education Tool

2019 ◽  
Vol 43 (2) ◽  
Author(s):  
Mona Li ◽  
Shelley Wall ◽  
Camilla Zimmermann
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Treatment Options ◽  
Patient Journey ◽  
Narrative Design ◽  
Disease Trajectory ◽  
Life Threatening ◽  
Education Tool ◽  
Timely Referral

Palliative care can improve quality of life in patients facing life-threatening illnesses by addressing their physical, emotional, spiritual, and practical needs. Research has shown that palliative care initiated early in the disease trajectory improves patients’ mood, quality of life, and even survival. Nevertheless, timely referral and willingness to initiate palliative care are hindered by stigma and the misconception that palliative care is for patients who have exhausted treatment options. Well-designed comics may be useful for addressing complex, stigmatized topics, because they are unintimidating, easy to consume, and relatable to readers. Unsurprisingly, educational comics can teach more effectively than text or verbal instruction. Since palliative care is valued by patients for being a person-centered and patient-led experience, comics may be uniquely suited to educate about this topic by embedding information in the context of an individual patient journey. The comic, currently a work-in-progress, will include a didactic narrative about palliative care and a situational narrative describing the patient experience. Feedback from palliative care patients during the development process will inform visual and narrative design of the comic.

The effects of animal-assisted interactions on quality of life in children with life-threatening conditions and their parents

2021 ◽  
Vol 27 (10) ◽  
pp. 524-530
Author(s):  
Haley Walker ◽  
Mary Chapman Miller ◽  
Brittany Cowfer ◽  
Terrah Akard ◽  
Mary Jo Gilmer
Keyword(s):  
Quality Of Life ◽  
Clinical Trial ◽  
Palliative Care ◽  
Primary Caregivers ◽  
Randomised Clinical Trial ◽  
Severe Stress ◽  
Quality Of Life Research ◽  
Threatening Condition ◽  
Life Threatening

Background: Children with advanced cancer and their primary caregivers may experience severe stress and anxiety in coping with their life-threatening condition. As a way to help reduce these stressors and increase overall quality of life, research suggests that animal-assisted interactions may be beneficial when integrated into palliative care. Aims: This pilot study aims to provide evidence for the feasibility and efficacy of a randomised clinical trial using animal-assisted interactions to help improve the quality of life for children with an advanced life-threatening condition and their primary caregivers. This protocol paper outlines the basis of the research, goals, experimental design and methodology.

The Promise of Palliative Care

Pained ◽  
2020 ◽  
pp. 203-206
Author(s):  
Michael D. Stein ◽  
Sandro Galea
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
End Of Life ◽  
Social Workers ◽  
Hospice Care ◽  
Care Plan ◽  
Life Care ◽  
High Quality ◽  
Life Threatening

This chapter assesses palliative care. Palliative care focuses on improving the quality of life for people with life-threatening illnesses by involving a team of nurses, doctors, social workers, and clergy in a care plan. Hospice care—administered in dedicated units and in services delivered at home—has been slowly expanding over the past two decades, but the increasing percentage of patients who use hospice for less than 7 days suggests that the full benefits of end-of-life palliative care are not being realized. Meanwhile, the use of unwanted, aggressive end-of-life care, often inconsistent with patient preferences, remains pervasive. For palliative care to be effective, it must be supported by government policies and insurer incentives; it must also be owned by communities, which must continue to ask for help in designing and paying for high-quality palliative care for patients and their caregiving families.

scholarly journals Hereditary angioedema: an update on causes, manifestations and treatment

2019 ◽  
Vol 80 (7) ◽  
pp. 391-398 ◽  
Author(s):  
Hilary J Longhurst ◽  
Konrad Bork
Keyword(s):  
Quality Of Life ◽  
Hereditary Angioedema ◽  
Genetic Disorder ◽  
Treatment Options ◽  
Correct Diagnosis ◽  
Self Administration ◽  
Diagnosis And Management ◽  
Life Threatening ◽  
Short And Long Term

Hereditary angioedema is a rare genetic disorder caused by deficiency of C1 esterase inhibitor (C1-INH) and characterized by recurrent episodes of severe swelling that affect the limbs, face, intestinal tract and airway. Since laryngeal oedema can be life-threatening as a result of asphyxiation, correct diagnosis and management of hereditary angioedema is vital. Hereditary angioedema attacks are mediated by bradykinin, the production of which is regulated by C1-INH. Hereditary angioedema therapy relies on treatment of acute attacks, and short- and long-term prophylaxis. Acute treatment options include C1-INH concentrate, icatibant and ecallantide. Self-administration of treatment is recommended and is associated with increased quality of life of patients with hereditary angioedema. Advances in diagnosis and management have improved the outcomes and quality of life of patients with hereditary angioedema.

Palliative and Hospice Care: Educational Needs of Inpatient Registered Nurses

2016 ◽  
Vol 22 (2) ◽  
pp. 114-120 ◽  
Author(s):  
Jennifer L. Ashley ◽  
Tracy K. Fasolino
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Acute Care ◽  
Formal Education ◽  
Care Setting ◽  
Hospice Care ◽  
Acute Care Setting ◽  
Life Threatening ◽  
Hospice And Palliative Care

Hospice and palliative care aim to improve the quality of life for patients and families impacted by chronic, serious, and life-threatening illnesses. Patients and families benefit from earlier integration of palliative care and seamless transitions to hospice care. Nurses are an integral part of the care team, and their understanding of these services is critical. However, many nurses do not receive formal education in hospice and palliative care. This leads to lack of skills that nurses need to provide and discuss hospice and palliative care across care settings. Nurses in an acute care setting of a large health system were invited to participate in a survey, Attitudes Towards Care at the End-of-Life. The results of this survey revealed that nurses believe that patients and families need to be communicated with honestly regarding their disease, but nurses lack the knowledge of how to facilitate these discussions. Another key finding is that nurses feel less confident with non-pharmacologic interventions to relieve patients’ suffering. Education is urgently needed in these areas.

scholarly journals The Role of Physiotherapy in Pediatric Palliative Care: A Systematic Review

Children ◽  
2021 ◽  
Vol 8 (11) ◽  
pp. 1043
Author(s):  
Silvia Ortiz-Campoy ◽  
Cristina Lirio-Romero ◽  
Helena Romay-Barrero ◽  
David Martín-Caro Álvarez ◽  
Purificación López-Muñoz ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Palliative Care ◽  
Scientific Evidence ◽  
Pediatric Palliative Care ◽  
Cochrane Library ◽  
Her Family ◽  
Life Threatening ◽  
Respiratory Physiotherapy

Pediatric palliative care (PPC) is a set of actions aimed at children who suffer from a severe or life-threatening disease to alleviate the symptoms of the disease and improve the quality of life of both the child and his/her family. One of the tools used to control symptoms is physiotherapy; however, its application in the child population has not been thoroughly studied. The main objective of this study was to gather, analyze, and critically evaluate the available scientific evidence on physiotherapy in children who require palliative care through a systematic review of the studies published in the last 10 years in the following databases: PubMed, Cochrane Library, PEDro, CINAHL, and Scopus. Of a total of 622 studies, the inclusion criteria were only met by seven articles, which were focused on the relationship between physiotherapy and PPC. This study analyzed: (1) the main pathologies treated, with a predominance of cerebral palsy and cancer; (2) the interventions applied, such as respiratory physiotherapy, neurological physiotherapy, therapeutic massage, and virtual reality; (3) the effects achieved in the child and his/her family, highlighting the control of symptoms and the improvement of the quality of life; and (4) the knowledge of the physiotherapists on PPC, observing that most of the professionals had not received training in this scope. The findings of this review indicate a lack of an adequate evidence foundation for physiotherapy in PPC.

scholarly journals Pediatric Oncology Palliative Care Programs in Central America: Pathways to Success

Children ◽  
2021 ◽  
Vol 8 (11) ◽  
pp. 1031
Author(s):  
Wendy Cristhyna Gómez García ◽  
Silvia Rivas ◽  
Gabriela Paz ◽  
Marisol Bustamante ◽  
Gerardo Castro ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Dominican Republic ◽  
Central America ◽  
Pediatric Oncology ◽  
Symptom Control ◽  
Financial Barriers ◽  
Future Directions ◽  
Life Threatening

Palliative care offers children who have life-limiting and life-threatening oncologic illnesses and their families improved quality of life. In some instances, impeccable symptom control can lead to improved survival. Cultural and financial barriers to palliative care in oncology patients occur in all countries, and those located in Central America are no exception. In this article, we summarize how the programs participating in the Asociación de Hemato-Oncólogos Pediatras de Centro America (AHOPCA) have developed dedicated oncology palliative care programs. The experience in Guatemala, El Salvador, Costa Rica, Panama, Dominican Republic and Haiti is detailed, with a focus on history, the barriers that have impeded progress, and achievements. Future directions, which, of course, may be impacted by the COVID-19 pandemic, are described as well.

Pelvic Organ Prolapse

2018 ◽  
Author(s):  
Lennox Hoyte ◽  
Renee Bassaly ◽  
Stuart Hart ◽  
Mona McCullough ◽  
Elisha Jackson
Keyword(s):  
Quality Of Life ◽  
Risk Factors ◽  
Pelvic Organ Prolapse ◽  
Healthcare Provider ◽  
Treatment Options ◽  
Pelvic Organ ◽  
Vaginal Wall ◽  
Life Threatening ◽  
Surgical Options

Pelvic organ prolapse (POP) is the descent of one of more aspects of the vagina and/or uterus. Evaluation of POP always begins with a thorough history and physical examination. Management choices include observation, conservative options, and surgical options. Surgical management is divided into two categories, which are restorative and obliterative. It is important to counsel patients that although POP may affect quality of life, it is not life-threatening. This chapter is designed to guide the healthcare provider with a review of epidemiology, anatomy, evaluation, and management of POP. The chapter contains 14 figures that illustrate examples of common examination findings, devices, and treatment options. Also, there are 5 tables that provide concise reference materials to help guide the healthcare provider. This review contains 91 references, 14 figures, and 6 tables. Key Words: constipation, mesh, pain, pelvic floor, pessary, POP-Q, risk factors, surgery, vaginal wall

Pelvic Organ Prolapse

2018 ◽  
Author(s):  
Lennox Hoyte ◽  
Renee Bassaly ◽  
Stuart Hart ◽  
Mona McCullough ◽  
Elisha Jackson
Keyword(s):  
Quality Of Life ◽  
Risk Factors ◽  
Pelvic Organ Prolapse ◽  
Healthcare Provider ◽  
Treatment Options ◽  
Pelvic Organ ◽  
Vaginal Wall ◽  
Life Threatening ◽  
Surgical Options

Pelvic organ prolapse (POP) is the descent of one of more aspects of the vagina and/or uterus. Evaluation of POP always begins with a thorough history and physical examination. Management choices include observation, conservative options, and surgical options. Surgical management is divided into two categories, which are restorative and obliterative. It is important to counsel patients that although POP may affect quality of life, it is not life-threatening. This chapter is designed to guide the healthcare provider with a review of epidemiology, anatomy, evaluation, and management of POP. The chapter contains 14 figures that illustrate examples of common examination findings, devices, and treatment options. Also, there are 5 tables that provide concise reference materials to help guide the healthcare provider. This review contains 91 references, 14 figures, and 6 tables. Key Words: constipation, mesh, pain, pelvic floor, pessary, POP-Q, risk factors, surgery, vaginal wall

Death at the Beginning

2015 ◽  
Author(s):  
Renee D. Boss
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
Prenatal Diagnosis ◽  
Congenital Anomalies ◽  
Pregnancy Termination ◽  
Treatment Options ◽  
Fetal Surgery ◽  
Technological Advances ◽  
Life Threatening

Medical and technological advances permit the survival of many infants born prematurely or with congenital anomalies. Prenatal diagnosis of a life-threatening fetal condition can give families the time to prepare for a sick infant and to consider treatment options ranging from pregnancy termination to fetal surgery. Despite the successes in perinatal and neonatal care, there remain a group of infants whose neonatal complications result in chronic illness, serious disability, and a foreshortened life span. It remains unclear how clinicians can best guide families who wish to make decisions based on their infant’s predicted quality of life. Multiple legal and policy restrictions attempt to limit the scope of parent–clinician decision making for these infants.

Symptom Management in Pediatric Palliative Care

2019 ◽  
pp. 699-707
Author(s):  
Joan “Jody” Chrastek ◽  
Camara van Breemen
Keyword(s):  
Palliative Care ◽  
Symptom Management ◽  
Cultural Norms ◽  
Healthcare Team ◽  
Pharmacological Interventions ◽  
Disease Treatment ◽  
Disease Trajectory ◽  
Threatening Condition ◽  
Life Threatening

Pediatric symptom management can be complex and challenging, but, when done well, it improves quality of life significantly. Assessment of symptoms should be started at the diagnosis of a life-threatening condition and continued throughout the trajectory of the condition or disease. Treatment methods of each symptom depend on the reversibility of the symptom, disease trajectory, and family goals of care. Both nonpharmacological and pharmacological interventions should be employed. Decisions should be made jointly between the healthcare team and the parents/caregivers. Cultural norms and traditions need to be respected and adhered to when possible. Palliative care should be holistic, addressing not only the physical but also the spiritual, emotional, and social aspects. This chapter provides an overview of managing common symptoms of dyspnea, excessive secretions, nausea/vomiting, constipation, and neurological issues. A list of websites, guidelines, and sample algorithms are included for further information.

Sign in / Sign up

Export Citation Format

Share Document