Perceptions of Palliative Care in the NICU

Abstract

Of domains of pediatric PC explored, participants emphasized transparent communication, family meetings as a venue for collaboration and shared decision making, the significance of psychosocial support for maternal emotional distress, and the importance of continuity of care across an often long and stressful hospitalization. Although mothers desired privacy, participants valued the security of the open-room NICU design. Future research should address components of PC that predominate in this specialized population.

Children’s unmet palliative care needs: a scoping review of parents’ perspectives

“…As expected, methods varied inclusive of: questionnaires33 34 38 40 42 45 47 48 50 55 57 59 65–67 71 74 75 77 self-report measures,31 48 59 in-depth interviews via different mediums (face to face/telephone)27–30 32 35–46 49 51–54 56 58–60 62–66 68–70 72 73 75 76 78–80 focus groups,27 38 41 50 52 56 61 65 70 79 an audit of nursing a psychology records34 and art-based workshops 75. The majority of studies used mixed-methods approaches to collect data.…”

“…The scoping review identification process highlighted 48 studies which discussed the unmet needs of children with LLCs and their families from the parent’s perspective 15 27–73. The references of these 48 studies were then hand-searched by GC, identifying seven further studies meeting the inclusion criteria 74–80.…”

“…The included articles were conducted in 16 locations internationally: UK,15 27 29 34 38–40 48 51 55 56 59 61 64 65 68 72 74 75 81 USA,30 32 35 37 44 52 58 60 66 77–80 Australia,45–47 54 57 76 31 43, Canada,49 53 58, Germany, 31 43 Switzerland,36 67 The Netherlands,63 73 Brazil,69 Indonesia,70 Lebanon,71 India,28 Sweden/Denmark,33 Malaysia,41 Hong Kong,42 and Cameroon 62. The UK, followed by the USA, Australia, and Canada, were the largest contributors to scoping review.…”

“…Parent samples ranged from n=2 to n=272 and were published between 1989 and 2019. While all studies sampled parents of children with LLCs, the majority used a parent-only sample28 29 31–37 40–44 46–51 53–55 57 58 63 64 66–69 72 73 76–78 80; others sampled both parents and some of the children with an 61 71 75 LLC; some sampled children, parents and professionals27 39 52 62; and the remaining studies sampled parents and professionals 30 38 45 56 59 60 65 70 74 79. While all studies discussed needs from the perspective of parents of a life-limited child, several of these accounts were retrospective experiences from bereaved parents 32 36 37 41 43 44 46 47 55 58 60 66 67 69 76–79 82.…”

“…Alongside exploring the needs of children with specific conditions, some of the studies also focused on particular palliative care service or setting: the hospice,39 40 48 65 community care34 38 45 47 59 62 and the hospital setting28 45 47 71 76 including the paediatric intensive care unit44 66 69 77–79 and neonatal intensive care unit30 55 and a cancer treatment centre 42. Several studies also focused on a specific palliative care need or aspect of palliative care, for instance, respite and short breaks,29 57 61 paediatric home care31end-of-life care41 77 79 advance care planning (ACP),43 56 transition,39 continuity and coordination,32 physician communication35 and care from paediatricians 72…”