Therapeutic letters: A qualitative study exploring their influence on the hope of parents of children receiving pediatric palliative care in Portugal

2021 ◽  
Author(s):  
Ricardo Fonseca ◽  
Matilde Carvalho ◽  
Ana Querido ◽  
Maria H. Figueiredo ◽  
Jill Bally ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Pediatric Palliative Care ◽  
Therapeutic Letters

A Qualitative Study Describing Pediatric Palliative Care in Non-Metropolitan Areas of Illinois

2021 ◽  
pp. 104990912110057
Author(s):  
Patrick Murday ◽  
Kimberly Downing ◽  
Erin Gaab ◽  
Jennifer Misasi ◽  
Kelly N. Michelson
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Care Coordination ◽  
Metropolitan Areas ◽  
Care Delivery ◽  
Healthcare Providers ◽  
Pediatric Palliative Care ◽  
Provider Education ◽  
Access And Quality ◽  
Future Work

Background: There is little information about providing pediatric palliative care (PPC) in non-metropolitan areas. Objective: Describe the strengths of and challenges to delivering PPC in non-metropolitan communities and identify opportunities to improve care delivery. Design: A qualitative study involving focus groups (FGs) with PPC stakeholders. Setting/Participants: From 4 non-metropolitan areas in Illinois, we recruited 3 stakeholder groups: healthcare providers (HPs); bereaved parents; and parents caring for a seriously ill child (SIC). Measurements: At each site, we held an FG with people of the same stakeholder group and then an FG involving all stakeholders. Discussion topics included: availability and strengths of local PPC services, barriers to local PPC, opportunities for improving local PPC access and quality, and clinician educational needs. We analyzed data using phenomenology and directed content analysis. Results: Thirty people, 12 parents and 18 HPs, participated in FGs. Identified themes related to: PPC perceptions; availability and use of local resources; and challenges associated with travel, care coordination, and finances. Participants described benefits of and limits to local PPC including pediatric-specific issues such as attending to siblings, creating child peer-support activities, providing school guidance, and financing for PPC. Recommendations included suggestions to enhance care coordination, use existing resources, improve community and provider education, develop community networks, and minimize financial challenges. Conclusion: Unique PPC challenges exist in non-metropolitan areas. PPC in non-metropolitan areas would benefit from enhancing local resource utilization and quality. Future work should address the challenges to providing PPC in non-metropolitan areas with a focus on pediatric-specific issues.

scholarly journals Anticipating the future of the child and family in pediatric palliative care: a qualitative study into the perspectives of parents and healthcare professionals

2020 ◽  
Author(s):  
Lisa M. Verberne ◽  
Jurrianne C. Fahner ◽  
Stephanie F. V. Sondaal ◽  
Antoinette Y. N. Schouten–van Meeteren ◽  
Chris C. de Kruiff ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Ad Hoc ◽  
Healthcare Professionals ◽  
Pediatric Palliative Care ◽  
Open Approach ◽  
Future Scenarios ◽  
Short Term ◽  
The Future ◽  
Future Care

Abstract Preparing for future scenarios in pediatric palliative care is perceived as complex and challenging by both families and healthcare professionals. This interpretative qualitative study using thematic analysis aims to explore how parents and healthcare professionals anticipate the future of the child and family in pediatric palliative care. Single and repeated interviews were undertaken with 42 parents and 35 healthcare professionals of 24 children, receiving palliative care. Anticipating the future was seen in three forms: goal-directed conversations, anticipated care, and guidance on the job. Goal-directed conversations were initiated by either parents or healthcare professionals to ensure others could align with their perspective regarding the future. Anticipated care meant healthcare professionals or parents organized practical care arrangements for future scenarios with or without informing each other. Guidance on the job was a form of short-term anticipation, whereby healthcare professionals guide parents ad hoc through difficult situations. Conclusion: Anticipating the future of the child and family is mainly focused on achievement of individual care goals of both families and healthcare professionals, practical arrangements in advance, and short-term anticipation when a child deteriorates. A more open approach early in disease trajectories exploring perspectives on the future could allow parents to anticipate more gradually and to integrate their preferences into the care of their child. What is Known:• Anticipating the future in pediatric palliative care occurs infrequently and too late. What is New:• Healthcare professionals and parents use different strategies to anticipate the future of children receiving palliative care, both intentionally and unwittingly. Strategies to anticipate the future are goal-directed conversations, anticipated care, and guidance on the job.• Parents and healthcare professionals are engaged to a limited extent in ongoing explorative conversations that support shared decision-making regarding future care and treatment.

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