Community Palliative Care Nurses’ Challenges and Coping Strategies on Delivering Home-Based Pediatric Palliative Care

2016 ◽  
Vol 34 (2) ◽  
pp. 125-131 ◽  
Author(s):  
LeeAi Chong ◽  
Adina Abdullah
Keyword(s):  
Palliative Care ◽  
Coping Strategies ◽  
Organizational Support ◽  
Skills Training ◽  
Pediatric Palliative Care ◽  
Care Services ◽  
Home Based ◽  
Palliative Care Services ◽  
Communication Challenges ◽  
And Coping

Objective: The aim of this study was to explore the experience of community palliative care nurses providing home care to children. Method: A qualitative study was conducted at the 3 community palliative care provider organizations in greater Kuala Lumpur from August to October 2014. Data were collected with semistructured interviews with 16 nurses who have provided care to children and was analyzed using thematic analysis. Two categories were identified: (1) challenges nurses faced and (2) coping strategies. The themes identified from the categories are (1) communication challenges, (2) inadequate training and knowledge, (3) personal suffering, (4) challenges of the system, (5) intrapersonal coping skills, (6) interpersonal coping strategies, and (7) systemic supports. Conclusions: These results reinforces the need for integration of pediatric palliative care teaching and communication skills training into all undergraduate health care programs. Provider organizational support to meet the specific needs of the nurses in the community can help retain them in their role. It will also be important to develop standards for current and new palliative care services to ensure delivery of quality pediatric palliative care.

scholarly journals Reluctance to Accept Palliative Care and Recommendations for Improvement: Findings From Semi-Structured Interviews With Patients and Caregivers

2021 ◽  
pp. 104990912110126
Author(s):  
Valeria Cardenas ◽  
Anna Rahman ◽  
Yujun Zhu ◽  
Susan Enguidanos
Keyword(s):  
Palliative Care ◽  
Controlled Trial ◽  
Insurance Coverage ◽  
Healthcare Providers ◽  
Health Condition ◽  
Insurance Companies ◽  
Structured Interviews ◽  
Care Services ◽  
Home Based ◽  
Palliative Care Services

Background: Despite some insurance plans now paying for home-based palliative care, recent reports have suggested that insurance coverage for palliative care may be insufficient in expanding patient access to home-based palliative care. Aim: To identify patients’ and caregivers’ perceived barriers to home-based palliative care and their recommendations for overcoming these barriers. Design: We conducted a qualitative study using semi-structured individual interviews. Our interview protocol elicited participants’ perspectives on home-based palliative care services; positive and negative aspects of the palliative program explanation; and suggestions for improving messaging around home-based palliative care. Setting/Participants: Twenty-five participants (patients, proxies, and their caregivers) who were eligible for a randomized controlled trial of home-based palliative care were interviewed by telephone. Results: Themes related to home-based palliative care referral barriers included reluctance to have home visits, enrollment timing, lack of palliative care knowledge, misconceptions about palliative care, and patients’ self-perceived health condition. Themes related to recommendations for overcoming these obstacles included ensuring that palliative care referrals come from healthcare providers or insurance companies and presenting palliative care services more clearly. Conclusion: Findings reinforce the need for additional palliative care education among patients with serious illness (and their caregivers) and the importance of delivering palliative care information and referrals from trusted sources.

scholarly journals Harnessing New and Existing Virtual Platforms to Meet the Demand for Increased Inpatient Palliative Care Services During the COVID-19 Pandemic: A 5 Key Themes Literature Review of the Characteristics and Barriers of These Evolving Technologies

2021 ◽  
pp. 104990912110366
Author(s):  
Holly R. Cherniwchan
Keyword(s):  
Palliative Care ◽  
Control Measures ◽  
Inpatient Setting ◽  
Overall Acceptability ◽  
Care Services ◽  
Infection Control Measures ◽  
Home Based ◽  
Palliative Care Services ◽  
Virtual Services ◽  
Case Basis

The COVID-19 pandemic has increased the demand for end-of-life services and bereavement support, and in many areas of the world, in-person palliative care is struggling to meet these needs. Local infection control measures result in limited visitation rights in hospital and patients are often dying alone. For many years, virtual platforms have been used as a validated alternative to in-person consults for outpatient and home-based palliative care; however, the feasibility and acceptability of a virtual inpatient equivalent is less studied. Virtual inpatient palliative care may offer a unique opportunity for patients to have meaningful interactions with their care team and family while isolated in hospital or in hospice. This narrative review examines strategies employed during the COVID-19 pandemic to implement virtual palliative care services in the inpatient setting. Five key themes were identified in the literature between January 2020-March 2021 in the LitCovid NCBI database: 1) overall acceptability of virtual inpatient palliative care during the pandemic, 2) important logistical considerations when developing a virtual inpatient palliative care platform, 3) commonly used technologies for delivering virtual services, 4) strategies for harnessing human resources to meet increased patient volume, and 5) challenges of virtual inpatient palliative care implementation. Upon review, telepalliative care can meet the increased demand for safe and accessible inpatient palliative care during a pandemic; however, in some circumstances in-person services should still be considered. The decision for which patients receive what format of care—in-person or virtual—should be decided on a case-by-case basis.

scholarly journals Advantages and challenges in using telehealth for home-based palliative care: A systematic mixed studies review protocol (Preprint)

2020 ◽  
Author(s):  
Simen A Steindal ◽  
Andréa Aparecida Goncalves Nes ◽  
Tove E. Godskesen ◽  
Susanne Lind ◽  
Alfhild Dhle ◽  
...  
Keyword(s):  
Palliative Care ◽  
Care Delivery ◽  
Patient Centered ◽  
Care Services ◽  
Home Based ◽  
Mixed Studies Review ◽  
Palliative Care Services ◽  
Meta Analyses ◽  
Systematic Mixed Studies Review ◽  
At Home

BACKGROUND Due to the increasing number of people in need of palliative care services and the current health care professional workforce strain, providing equitable, quality palliative care has become a challenge. Telehealth could be an innovative approach to palliative care delivery, enabling patients to spend more time or even remain at home, if they wish, throughout the illness trajectory. However, no previous systematic mixed studies reviews have synthesized evidence on patients’ experiences of the advantages and challenges of telehealth for home-based palliative care. OBJECTIVE The aim of this systematic mixed studies review is to critically appraise and synthesize findings from studies that investigated patients’ use of telehealth in home-based palliative care with a focus on the advantages and challenges experienced by the patients. METHODS This article describes the protocol for a systematic mixed studies review with a convergent design. The reporting will be guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Statement. A systematic search was performed in eight databases for studies published from January 2010 to June 2020. The search will be updated in 2021. Pairs of authors will independently assess eligibility, extract data and assess methodological quality. The data will then be analyzed using thematic synthesis. RESULTS We described the rationale and design of a systematic mixed studies review. The database searches were performed on June 25, 2020. Assessment of eligibility and further steps have not yet been performed. Results are anticipated by August 2021. CONCLUSIONS Following the ethos of patient-centered palliative care, this systematic mixed studies review could contribute recommendations for practice and policy enabling the development of telehealth applications and services that align with patients’ preferences and needs when using telehealth applications and services at home.

Meeting the needs of family carers: an evaluation of three home-based palliative care services in Australia

2010 ◽  
Vol 24 (2) ◽  
pp. 183-191 ◽  
Author(s):  
Kristina Thomas ◽  
Peter Hudson ◽  
Lynn Oldham ◽  
Brian Kelly ◽  
Tom Trauer
Keyword(s):  
Palliative Care ◽  
Family Carers ◽  
Care Services ◽  
Home Based ◽  
Palliative Care Services

The Relationship between Theory and Measurement in Evaluations of Palliative Care Services

1987 ◽  
Vol 3 (2) ◽  
pp. 8-13 ◽  
Author(s):  
Lesley F. Degner ◽  
Paul D. Henteleff ◽  
Carol Ringer
Keyword(s):  
Palliative Care ◽  
Test Design ◽  
Care Services ◽  
Dependent Variables ◽  
Post Test ◽  
Palliative Care Services ◽  
Symptom Distress Scale ◽  
And Coping ◽  
Distress Scale ◽  
The Relationship

Studies to determine the effectiveness of palliative care services have been limited by difficulties in measuring relevant dependent variables. While reliabilities of various measures have been reported for terminally ill populations, the broader issue of whether such measures are sensitive to the effects of palliative care services has not been addressed. Such assessments are essential if the relative efficacy of alternative models of palliative care (for example, inpatient facilities versus consultation teams) are to be determined. This pilot study used a specific theoretical framework, Brickman's models of helping and coping, to assess three measures in a pretest / post-test design with 29 patients admitted to an established palliative care unit. Results indicated that only one measure, the Symptom Distress Scale, was both reliable and sensitive to the effects of the service. The results suggested that evaluations of palliative care services may be influenced by the extent to which measures are empirical indicators of the model of helping used within the setting.

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.

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