scholarly journals The Role of Resilience in the Sibling Experience of Pediatric Palliative Care: What Is the Theory and Evidence?

Children ◽  
2018 ◽  
Vol 5 (7) ◽  
pp. 97 ◽  
Author(s):  
Wei Chin ◽  
Tiina Jaaniste ◽  
Susan Trethewie
Keyword(s):  
Palliative Care ◽  
Family System ◽  
Pediatric Palliative Care ◽  
Future Research ◽  
Medical Conditions ◽  
Disease Trajectory ◽  
Care Services ◽  
The Family ◽  
Palliative Care Services

Siblings of children with life limiting conditions (LLC) are an important part of the broader family system and require consideration in the holistic care of the family. There can be considerable variation in the functioning and adjustment of these siblings. The current paper explores the resilience paradigm, particularly in the context of siblings of children with LLC and serious medical conditions. The potential impact of children living with a seriously ill brother or sister will be overviewed, and a range of functional outcomes considered. Factors contributing to sibling resilience are detailed, including individual, family, and broader external and social factors. Given the limited research with siblings of children with LLC, literature has also been drawn from the siblings of children with serious and/or chronic medical conditions. Implications for clinical practice and future research are considered. Pediatric palliative care services may be well placed to contribute to this body of research as they have commonly extended relationships with the families of children with LLC, which span across the child’s disease trajectory.

Palliative Care Work, Between Death and Discharge

2005 ◽  
Vol 21 (2) ◽  
pp. 97-102 ◽  
Author(s):  
Margaret O'Connor ◽  
Louise Peters ◽  
Susan Lee ◽  
Cecilia Webster
Keyword(s):  
Palliative Care ◽  
Turnover Time ◽  
Her Family ◽  
Care Services ◽  
The Family ◽  
Palliative Care Services ◽  
Time Required ◽  
Death Care

This paper discusses a small study that was undertaken in a palliative care unit (PCU) to demonstrate reasons for the lengthy patient turnover time after the death of a patient. The study arose from a managerial challenge about the PCU's efficiency in comparison to other settings of care. While Palliative care services in Australia are loosely funded on a per diem rate, casemix funding models for inpatient services in other settings reward efficiency in terms of length of stay (1). The aim of the study was to undertake a post-death survey, from the nursing perspective, of activities and the time required to deliver follow-up care, as required, to the deceased patient and his/her family. Details of the post-death episode for all patients who died in the PCU over two time periods were collected using a newly designed tool. This paper does not argue for the incorporation of post-death nursing work as a measure of efficiency or quality; rather, it is a demonstration of the type of work and the time involved in carrying out post-death work. This nursing work is an essential but hidden and generally unacknowledged element of palliative care and, not surprisingly, there is a dearth of literature describing the role of the nurse in providing care of the family and others after the patient has died. This project has provided important information about the factors that Protract after-death care, and gives some insight into the role of the nurse after a death occurs in a PCU.

Palliative Care in the Perinatal Setting

2019 ◽  
pp. 749-757
Author(s):  
Cheryl Ann Thaxton ◽  
Diana Jacobson ◽  
Heather Murphy ◽  
Tracey Whitley
Keyword(s):  
Palliative Care ◽  
Neonatal Intensive Care ◽  
Psychological Symptom ◽  
Culturally Competent ◽  
Maternal Complications ◽  
Patient Centered ◽  
Care Services ◽  
Nursing Communication ◽  
The Family ◽  
Palliative Care Services

The nurse is an essential interdisciplinary partner in the delivery of family- and patient-centered palliative care for families faced with perinatal or newborn loss in the labor and delivery (L&D) unit and in the neonatal intensive care unit (NICU). Early identification and referral of the family to perinatal and neonatal palliative care services is paramount. Improving nursing communication with the family, advocating for the family, and providing supportive nursing care, which includes physical and psychological symptom management, are emphasized. The L&D unit is an area in which patients can experience both joy and loss; it is imperative that L&D nurses receive education about palliative care in the event of maternal complications and/or congenital anomalies that lead to the death of a newborn. Principles of essential individualized, compassionate, and culturally competent palliative care interventions are reviewed using patient and family exemplars.

Hospital-Based Palliative Care

2019 ◽  
pp. 13-31
Author(s):  
Patricia Maani-Fogelman
Keyword(s):  
Palliative Care ◽  
Interpersonal Communication ◽  
Communication Skills ◽  
Complex Needs ◽  
Care Services ◽  
Medical Clinics ◽  
Palliative Care Services ◽  
Role Of Nursing ◽  
Consultation Time

Hospital-based palliative care (HBPC) is often the primary contact between patients and the field of palliative care. As such, HBPC programs must be built to withstand the challenges and demands of the changing healthcare landscape and the shifting, often complex needs of the inpatient consultation. Time, energy, strong interpersonal communication skills, and dedication are key elements to building a successful HBPC program. Attention to detail and attentiveness to patient wishes round out the foundation of the continuum. HBPC is a forum for expansion of palliative care services into the medical clinics, outreach facilities, community-based practices, and home care venues. The role of nursing across this spectrum of care amid advancing chronic illness is a vital aspect of programmatic success. Ongoing education and research must be offered and resourced for HBPC and palliative care in general to remain steadfast and successful against the background of national healthcare reform.

Palliative Care—What, Who and When?

2011 ◽  
Vol 4 (11) ◽  
pp. 624-632
Author(s):  
Emma Cope ◽  
Patrick Daly
Keyword(s):  
Palliative Care ◽  
General Practice ◽  
Royal College ◽  
Palliative Care Team ◽  
Care Team ◽  
Ageing Population ◽  
Care Services ◽  
Specialist Services ◽  
Palliative Care Services

Palliative care is a speciality which has grown considerably in recent years gaining recognition as its own subspecialty of medicine by the Royal College of Physicians in 1987. GPs have always had a role in providing palliative care, and as our ageing population increases, the number of people living with incurable illnesses will continue to rise. This article aims to provide an understanding of palliative care medicine, the role of the GP in the palliative care team, guidance to help identify those patients who may benefit from palliative care services and when referral to specialist services may be needed. We have also highlighted key documents pertaining to palliative care applicable to general practice.

scholarly journals Adolescents and Young Adults Living With an Uncertain or Poor Cancer Prognosis: The “New” Lost Tribe

2021 ◽  
Vol 19 (3) ◽  
pp. 240-246
Author(s):  
Vivian W.G. Burgers ◽  
Winette T.A. van der Graaf ◽  
Daniël J. van der Meer ◽  
Martin G. McCabe ◽  
Anita W. Rijneveld ◽  
...  
Keyword(s):  
Palliative Care ◽  
Cancer Prognosis ◽  
Adolescent And Young Adult ◽  
Future Research ◽  
Care Needs ◽  
Novel Treatments ◽  
Care Services ◽  
Life Years ◽  
Palliative Care Services ◽  
Cure Rates

Historically, adolescent and young adult (AYA) patients with cancer, diagnosed for the first time at age 15 through 39 years, have often been identified as a “lost tribe” without a medical “home”; neither pediatric nor adult oncology services were able to provide age-appropriate care to this specific group. Internationally, AYA care programs are being established to bridge the gap between the age-defined healthcare worlds and to address the specific needs of AYAs with cancer. However, AYA care programs mostly focus on improving cure rates and addressing survivorship issues, and direct less attention to the unique needs of those living with an uncertain and/or poor cancer prognosis. Additionally, palliative care services are typically poorly equipped to address the age-specific needs of this group. Given that increasingly more AYAs with an uncertain and/or poor cancer prognosis are gaining life years because of novel treatments, and sometimes even face the prospect of long-term disease control, AYA care programs should address the unique palliative care needs of this “new” lost tribe within AYA oncology. This report provides a definition and description of the AYA population living with an uncertain and/or poor cancer prognosis in terms of epidemiologic, clinical, and psychosocial characteristics and challenges, and provides perspectives for future research and care initiatives. It also highlights the need to comprehensively examine the experience of AYAs who are living with uncertain and/or poor cancer prognosis to adjust best care practices for this unique group.

scholarly journals Strategies for introducing outpatient specialty palliative care in gynecologic oncology.

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 111-111
Author(s):  
Casey M. Hay ◽  
Carolyn Lefkowits ◽  
Marie Bakitas ◽  
Megan Crowley-Makota ◽  
Renata Urban ◽  
...  
Keyword(s):  
Palliative Care ◽  
Symptom Control ◽  
Gynecologic Oncology ◽  
Relationship Building ◽  
Future Research ◽  
Patient Anxiety ◽  
Telephone Interviews ◽  
Care Services ◽  
Qualitative Interview Study ◽  
Palliative Care Services

111 Background: Concern that patients will react negatively to the idea of palliative care is cited as a barrier to timely referral. Strategies to successfully introduce specialty palliative care to patients have not been well-described. We sought to understand how gynecologic oncologists introduce outpatient specialty palliative care. Methods: We conducted a national qualitative interview study at six geographically diverse academic cancer centers with well-established palliative care clinics between September 2015 and March 2016. Thirty-four gynecologic oncologists participated in semi-structured telephone interviews focusing on attitudes, experiences, and practices related to outpatient palliative care. A multidisciplinary team analyzed interview transcripts using constant comparative methods to inductively develop and refine a coding framework. This analysis focuses on practices for introducing palliative care. Results: Mean participant age was 47 years (± 10). Mean interview length was 25 minutes (± 7). Gynecologic oncologists described three main strategies for introducing outpatient specialty palliative care: first establish a strong primary relationship and trust with patients in order to alleviate fear and increase acceptance of referral; focus initial palliative care referral on symptom control to gain a “foot in the door”, facilitate early relationship-building with palliative care clinicians, and dissociate palliative care from end-of-life; and normalize and explain palliative care referral to decrease patient anxiety and confusion. These strategies aimed to decrease negative patient associations and encourage acceptance of early referral to palliative care specialists. Conclusions: Gynecologic oncologists have developed strategies for introducing palliative care services to alleviate patient concerns. Future research should examine patient perception of these strategies and assess impact on rates of acceptance of outpatient specialty palliative care referral.

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