| Literature DB >> 33794302 |
Michael J McNeil1, Erica C Kaye2, Yuvanesh Vedaraju3, Justin N Baker2, Meenakshi DevidasPhD3, Julia Downing4, Dylan Graetz3, Radhikesh Ranadive3, Abby R Rosenberg5, Lori Wiener6, Meaghann S Weaver7.
Abstract
CONTEXT: The coronavirus pandemic (COVID-19) has profoundly impacted the provision of pediatric palliative care (PPC) interventions including goals of care discussions, symptom management, and end-of-life care.Entities:
Keywords: COVID-19; Global; Pediatric Palliative Care
Year: 2021 PMID: 33794302 PMCID: PMC8007190 DOI: 10.1016/j.jpainsymman.2021.03.016
Source DB: PubMed Journal: J Pain Symptom Manage ISSN: 0885-3924 Impact factor: 3.612
Fig. 1Legend: Presentation of respondent flowchart, including participant exclusion, and final number of participants.
Survey Participants Demographics
| Physician | 92 (58.97) |
| Nurse Practitioner/Physician Assistant/Advance Practice Provider | 15 (9.62) |
| Nurse/Nurse case manager | 22 (14.1) |
| Psychologist | 5 (3.21) |
| Child Life Therapist/Play Specialist | 4 (2.56) |
| Pharmacist | 3 (1.92) |
| Charity/Program Coordinator | 3 (1.92) |
| Social Work/Counselor | 6 (3.85) |
| Other | 6 (3.85) |
| Full-time practicing pediatric palliative care | 91 (58.33) |
| Part-time practicing pediatric palliative care | 65 (41.67) |
| Low income & Lower middle income | 48 (30.77) |
| Upper middle income | 39 (25) |
| High income | 69 (44.23) |
| East Asia & Pacific | 20 (12.82) |
| Europe & Central Asia | 44 (28.21) |
| Latin America & Caribbean | 36 (23.08) |
| Middle East & North Africa | 7 (4.49) |
| North America | 14 (8.97) |
| South Asia | 13 (8.33) |
| Sub-Saharan Africa | 22 (14.1) |
| Total | 156 (100) |
*Other: Medical Volunteer, Integrative Therapist, General Support, Physiotherapist, Spiritual Support, General Palliative Care
Fig. 2Legend: Countries represented by participants. Colors denote number of respondents per country. Blue is 1-3 participants, Red is 5-6 participants, Orange is 7-9 participants, and Green is 10-12 participants.
Physical Presence of Pediatric Palliative Care Team
| Physicians | 63 (60.58) | 8 (7.69) | 26 (25) | 0 (0) | 4 (3.85) | 3 (2.88) | 104 |
| Nurse Practitioners/Advanced Practice Providers | 59 (60.82) | 5 (5.15) | 20 (20.62) | 2 (2.06) | 8 (8.25) | 3 (3.09) | 97 |
| Nurses/Nurse Case Managers | 58 (58.58) | 3 (3.03) | 22 (22.22) | 1 (1.01) | 10 (10.10) | 5 (5.05) | 99 |
| Social workers | 32 (32) | 14 (14) | 35 (35) | 5 (5) | 10 (10) | 4 (4) | 100 |
| Chaplains | 18 (18.56) | 7 (7.22) | 18 (18.56) | 7 (7.22) | 31 (31.96) | 16 (16.49) | 97 |
| Integrative therapists | 12 (12.77) | 4 (4.26) | 11 (11.70) | 8 (8.51) | 43 (45.74) | 16 (17.02) | 94 |
| Bereavement coordinators | 18 (19.15) | 6 (6.38) | 17 (18.09) | 3 (3.19) | 37 (39.36) | 13 (13.83) | 94 |
| Child life specialists | 14 (14.58) | 5 (5.21) | 9 (9.38) | 6 (6.25) | 44 (45.83) | 18 (18.75) | 96 |
| Psychologists | 26 (26.53) | 10 (10.20) | 29 (29.59) | 1 (1.02) | 21 (21.43) | 11 (11.22) | 98 |
Communication
| Communications have become more frank | 10 (11.11) |
| Communication has become more decisional | 24 (26.67) |
| Fewer extended relatives are present | 48 (53.33) |
| No Change | 19 (21.11) |
| Less in-person interaction | 7 (7.11) |
| Other* | 2 (2.22) |
| Yes | 69 (74.19) |
| No | 24 (25.81) |
| Yes | 84 (91.30) |
| No | 8 (8.70) |
| Yes | 25 (28.09) |
| No | 64 (71.91) |
*Other: One respondent stated that there were less palliative care patients in conversations; Another respondent stated that both personnel and families were more isolated
Lessons Learned From COVID-19
| Remote Communication and Mobility Opportunities | “We were caught unprepared. Would have loved to learn more on virtual support and monitoring” |
| Logistical improvements in infection control, hospital systems, and integration of PPC | “How to respond to public health emergencies/pandemic and manage our system in the hospital vis-a-vis the institutional policies.” |
| Challenges associated with isolation and absence | “I used to touch patient during communication…it is sad not to do now.” |
| Use of technology to facilitate communication | “…communication is possible through many means (phone, messaging, etc) Liaisons have become easier for me, maybe because I am doing it more during the pandemic” |
| Importance of access to quality PPC | “The pandemic such as COVID 19 can change the way how we provide quality care to our patients. For physicians who are adamant about palliative care, the COVID highlighted the need to incorporate palliative care services in the care of patients with life-threatening diseases including COVID 19.” |
| Value of Communication | “The importance of other communication channels and overcoming the distances that may exist” |
| Adapting to new/difficult circumstances and gaining new skills | “The pandemic has changed my way of thinking and has brought out my skill as a nurse in not only managing physical issues but my ability to support and care for our children, their families and our care team and their families from an emotional point of view - which has been hugely challenging” |
| COVID-19 and its impact on end-of-life care | “I never will forget the burden for parents knowing that their child is dying not just because of cancer but because of COVID, being apart from the family, feeling alone including time to be buried without anybody present.” |
| Inability to provide comfort to patients and families at the end-of-life | “The added layers of complexity and difficulty associated with physical distancing stipulations and witnessing the further heartache in not being able to bring loved ones together to mourn the death of a child.” |
| Fear of the unknown | “Most health personnel were afraid of dealing with something unknown, and possibly fatal.” |