Understanding pediatric palliative care within interdisciplinary palliative programs: a qualitative study

Abstract

Purpose To describe the process of delivery of pediatric palliative care from the perspective of a pediatric interdisciplinary team and the children’s parents. Methods A qualitative descriptive case study was conducted. Purposeful sampling took place within a specialized pediatric palliative care Unit in Madrid (Spain), located at the Niño Jesus Hospital. The study participants included a specialized pediatric palliative care team from Madrid's pediatric palliative care program, other professional teams involved in interdisciplinary care and parents of children under pediatric palliative care. Data were collected via semi-structured interviews, focus groups and researchers’ field notes. A thematic analysis was performed. Results This study included 28 participants (20 women, 8 men), of whom 18 were professionals who belonged to the pediatric palliative care interdisciplinary team, 4 professionals were from other units that collaborated with the pediatric palliative care, and 6 were parents (5 women, 1 man). The mean age of the pediatric palliative care members was 38.2 years (SD ± 7.9), that of the collaborating professionals was 40.5 (SD ± 6.8), and that of the parents was 44.2 (SD ± 5.4). Two main themes emerged: a) Pediatric palliative care has a distinct identity, associated with life. It represents the provision of special care in highly complex children, in the context of the home, far from the hospital environment; b) The team is key: its interdisciplinary organization provides a more comprehensive view of the child and their family, fosters communication among professionals, and improves coordination with other services involved in the care of children. The mindset shift experienced by ID-PPC professionals towards a palliative approach makes them more sensitive to the needs of their patients and leads them to develop specific skills in areas such as communication, decision-making, and adaptability that were identified as differentiating aspects of pediatric palliative care. Conclusions Describing pediatric palliative care from the professional and parental perspective helps to establish realistic and comprehensive goals for the care of children and their parents. The findings of this study may help with the establishment of a pediatric palliative care team, as a necessary organizational change in a health care system that cares for children with complex and life-threatening conditions. Promoting training in pediatric palliative care, prioritizing more horizontal organizations, providing tools and spaces for coordination and communication between professionals from different services, together with the creation of a position of case coordinator in the care process of children could enhance the understanding of pediatric palliative care services.

It’s about living a normal life: parents’ quality of life when their child has a life-threatening or life-limiting condition - a qualitative study

“…Our study found that parents were highly appreciative when professionals from the hospital acted as “translators” of the severe situation to the municipalities. This finding is supported by Rico-Menas’s study, which suggests that promoting training in PPC, prioritizing more horizontal organizations, providing coordination and communication between professionals from different services, and establishing a position of case coordinator could improve understanding in PPC services [ 55 ]. The findings show that it is necessary to implement and improve PPC at all levels of health care.…”

The needs of healthcare personnel who provide home-based pediatric palliative care: a mixed method systematic review

“…The included studies originated from Europe (n = 16) [ 18 , 20 , 22 , 24 – 26 , 28 – 33 , 35 – 38 ], North America (n = 2) [ 27 , 34 ], Australia (n = 1) [ 19 ], Africa (n = 1) [ 21 ], and Asia (n = 1) [ 23 ]. Thirteen studies were qualitative and took the form of interview studies [ 19 – 23 , 26 – 29 , 34 , 35 , 37 , 38 ]. Seven studies were quantitative and presented survey data [ 18 , 24 , 30 – 33 , 36 ], and study had a mixed methods approach [ 25 ].…”

“…Seven studies were quantitative and presented survey data [ 18 , 24 , 30 – 33 , 36 ], and study had a mixed methods approach [ 25 ]. Physicians (n = 333), including pediatricians [ 22 , 24 , 25 , 30 , 35 , 37 , 38 ], were the largest participant group, followed by nurses (n = 219) [ 18 , 19 , 21 – 23 , 27 – 29 , 34 – 38 ]. Some studies involved other healthcare personnel, such as counsellors, assistant nurses, occupational therapists, physiotherapists, dietitians [ 22 , 35 , 37 ], paramedics, psychosocial professionals, and other professionals [ 31 , 35 , 37 , 38 ], and home-based care workers [ 21 ].…”

“…Physicians (n = 333), including pediatricians [ 22 , 24 , 25 , 30 , 35 , 37 , 38 ], were the largest participant group, followed by nurses (n = 219) [ 18 , 19 , 21 – 23 , 27 – 29 , 34 – 38 ]. Some studies involved other healthcare personnel, such as counsellors, assistant nurses, occupational therapists, physiotherapists, dietitians [ 22 , 35 , 37 ], paramedics, psychosocial professionals, and other professionals [ 31 , 35 , 37 , 38 ], and home-based care workers [ 21 ]. Two studies presented participants as external stakeholders, in-patient hospital staff, and hospice at home teams [ 20 ] or as allied health clinicians [ 19 ].…”

“…Sometimes healthcare personnel did not know the child before the first home visit [ 29 ]. To ensure that the care they provided met the needs of the child and family at home and to make decision-making a shared responsibility between healthcare personnel and parents, healthcare personnel stressed the need to build a trusting relationship with the child and their family [ 18 , 19 , 22 , 23 , 25 , 26 , 28 , 29 , 34 , 35 , 37 , 38 ]. Healthcare personnel found that establishing a trusting relationship made families feel safe and protected and had the potential to alleviate the burdens experienced as their children’s illnesses progressed [ 22 , 23 , 25 , 26 , 35 , 37 ].…”