Care practices of specialized outpatient pediatric palliative care teams in collaboration with parents: Results of participatory observations

Abstract

Background: Collaboration between parents and professional care providers is an essential part of pediatric palliative care. As children are embedded in family systems and many of the patients are not able to communicate verbally, their parents are the primary interaction partners for palliative care providers. International standards for pediatric palliative care in Europe state that parents should be supported, acknowledged as the primary carers and involved as partners in all care and decisions. Aim: To find out through which care practices pediatric palliative care teams shape collaboration with parents in everyday care. Design: Ethnographic method of participatory observations. Field notes were analyzed using thematic analysis. Setting/participants: Researchers accompanied three pediatric palliative care teams on home visits to eight different families caring for a child with life-limiting conditions. Results: Care practices of palliative care teams were characterized by familiarity, a resource-oriented attitude, empowerment of parents, shared decision-making and support for parents. Palliative care teams not only provided palliative medical treatment for the children, but also developed a trusting care partnership with parents. The teams employed a sensitive and multifaceted communication style in their collaboration with parents. Conclusions: Care practices in pediatric palliative care require time, communication skills, and a high level of psychosocial competence, to develop a trusting, collaborative relationship with parents. This should be taken into consideration when establishing pediatric palliative care structures, preparing guidelines, training staff, and deciding upon appropriate remuneration.

Buscando por conexão humana para transcender simbolismos dos cuidados paliativos em pediatria

“…Conexão, empatia e compaixão provocam o profissional a assumir o lugar do outro e ver o mundo sob a perspectiva dele, buscando, dessa forma, compreender, na singularidade de cada família e da sua história, os seus desejos, valores e o seu sagrado, que afirmam o bem-estar da criança e sua qualidade de vida como uma meta comum entre profissional e família. Essas evidências corroboram as evidências de outros estudos (14)(15)(16)(17)(18)(19)(20) sobre experiências de profissionais e famílias de crianças em CPP.…”

“…Cuidar da família de crianças em condições ameaçadoras de vida, portanto, elegíveis para os CP, é um dever ético, pautado na crença de que as crianças existem no contexto da família. Além disso, as famílias têm o direito de cuidar em virtude do sofrimento e da vulnerabilidade de seus filhos, sendo fundamental que os profissionais assumam o dever de ouvir as famílias com compaixão, melhorando a comunicação, potencializando o empoderamento dos pais e a tomada de decisão compartilhada (16)(17)(18)(19) . Tais evidências aproximam-se dos pressupostos do Cuidado Centrado na Família (CCF), filosofia de cuidado que possui estreita relação com os princípios do CPP.…”

Spezialisierte ambulante Palliativversorgung für Kinder, Jugendliche und ihre Familien – die besonderen Belange der Zielgruppe. Ergebnisse der ELSAH-Studie

“…1 dargestellt. Detaillierte Ausführungen zu Methodik und Ergebnissen der einzelnen Projektschritte wurden an anderer Stelle veröffentlicht [ 7 , 11 , 18 , 19 ]. In systematischen Diskussionen wurden die Ergebnisse der verschiedenen Datenerhebungen im Forscherinnenteam synthetisiert, um auf dieser Grundlage Empfehlungen für die Überarbeitung der SAPV-Richtlinie zu formulieren.…”

“…Im Folgenden sind die zusammengeführten Ergebnisse aller Datenerhebungen aus dem Arbeitspaket 2 des ELSAH-Projekts dargestellt. Detailergebnisse zu den einzelnen Erhebungen wurden an anderer Stelle ausführlich beschrieben [ 7 , 18 , 19 ]. Zunächst werden die besonderen Belange von Kindern, Jugendlichen und ihren Familien in der SAPV dargestellt sowie die besonderen Anforderungen, die diese Belange an die Erbringung der SAPV-KJ stellen.…”

Spezialisierte Ambulante Palliativversorgung (SAPV)

“…In qualitativen Interviews mit im häuslichen Umfeld betreuten palliativen Patient*innen waren diese sehr zufrieden mit der SAPV; sie schätzten insbesondere in Bezug auf die Patientenzentrierung die Verfügbarkeit, Bereitstellung von Informationen, Fachkompetenz, Patientenbefähigung und Vertrauen, in Bezug auf die Organisationsarbeit die umfassende Verantwortung sowie externe und interne Zusammenarbeit und schließlich die direkte Kommunikation [4]. Ähnliches wurde auch in der pädiatrischen SAPV beobachtet, bei der neben der palliativen Begleitung der Kinder auch eine vertrauensvolle, partnerschaftliche Unterstützung der Eltern im Vordergrund stand [11].…”