ObjectiveIn Germany, children with life-limiting conditions and complex symptoms are eligible for specialised outpatient palliative care (SOPC). In the federal state of Hesse, SOPC for children (SOPPC) is delivered by teams with paediatric expertise. While burdened by the life-limiting condition of their child, parents must also fulfill their roles as main care providers and decision makers. Collaboration between parents and SOPPC teams is important, as the intermittent care and uncertainty it entails often lasts for several months or years. We explored parents’ experiences and their demands of collaboration with SOPPC teams.MethodsWe conducted nine narrative interviews with 13 parents of children and adolescents with life-limiting conditions and used a grounded theory approach to analyse interview data.ResultsParents stressed the importance of paediatric expertise, honesty, psychosocial support, an individualised approach, experience of self-efficacy and the need to be recognised as experts for their children. The narrative interviews showed that collaboration between parents and SOPPC teams was characterised by parents’ need for specialised professional assistance and their simultaneous empowerment by SOPPC teams.ConclusionsParents’ perceptions of what good collaboration with SOPPC teams entails are manifold. To meet these complex needs, SOPPC requires time and specialised expertise.
Background The use of patient-reported outcome measures (PROM) and caregiver-reported outcome measures can raise the patient centeredness of treatment and improve the quality of palliative care. Nevertheless, the everyday implementation of self-report in patients and caregivers is complex, and should be adapted for use in specific settings. We aimed to implement a set of outcome measures that included patient and caregiver self- and proxy-reported outcome measures in specialised outpatient palliative care (SOPC). In this study, we explore how the Integrated Palliative Outcome Scale (IPOS), IPOS Views on Care (IPOS VoC) and the Short-form Zarit Caregiver Burden Interview (ZBI-7) can be feasibly, acceptably and appropriately implemented in the daily care routines of SOPC. Methods Five SOPC teams were trained, and used the outcome measures in daily practice. Team members were mainly nurses and physicians. To investigate their feedback, we used a multi-method qualitative design consisting of focus groups with SOPC-team members (n = 14), field notes of meetings and conversations with the SOPC teams. In an iterative process, we analysed the findings using qualitative content analysis and refined use of the outcome measures. Results We found that integrating patient and caregiver outcome measures into daily care routines in SOPC is feasible. To improve feasibility, acceptability and appropriateness, the resulting burden on patients and relatives should be kept to a minimum, the usefulness of the measures must be understood, they should be used considerately, and administration must be manageable. We removed ZBI-7 from the set of measures as a result of feedback on its content and wording. Conclusions SOPC-team members have reservations about the implementation of PROM in SOPC, but with appropriate adjustments, its application in daily care is feasible, accepted and perceived as appropriate. Previous to use, SOPC-team members should be trained in how to apply the measures, in the design of manageable processes that include integration into electronic documentation systems, and in ongoing evaluation and support. They should also be taught how useful the measures can be. Trial registration May 19th, 2017, German Clinical Trials Register DRKS-ID: DRKS00012421.
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.
Zusammenfassung Hintergrund und Ziel Lebenslimitierend erkrankte Kinder und Jugendliche mit komplexem Symptomgeschehen haben Anspruch auf eine spezialisierte ambulante Palliativversorgung (SAPV). In der Richtlinie zur SAPV heißt es lediglich: „Den besonderen Belangen von Kindern und Jugendlichen ist Rechnung zu tragen.“ Das Ziel der Studie ist es deshalb, diese besonderen Belange zu identifizieren und Empfehlungen zur Überarbeitung der SAPV-Richtlinie zu formulieren. Methoden Sequenzielles Mixed-Methods-Design mit Fragebogenerhebungen, qualitativen Interviews, teilnehmenden Beobachtungen und Fokusgruppendiskussionen mit Angehörigen, Patient*innen und Leistungserbringer*innen der SAPV in Hessen sowie der Auswertung von Dokumentationsdaten der hessischen SAPV-Teams. Ergebnisse Kinder und Jugendliche in der SAPV leiden an komplexen, oftmals seltenen Erkrankungen und bedürfen einer besonders aufwendigen Palliativversorgung durch ein Team mit pädiatrischer Expertise. Die SAPV muss die gesamte Familie einbeziehen und oftmals überregional verteilte Versorger*innen koordinieren. Zudem ist eine besonders aufwendige psychosoziale Versorgung von Patient*innen und Angehörigen notwendig. Die SAPV für Kinder und Jugendliche ist weniger bekannt als die SAPV für Erwachsene und der Zugang für die Familien deshalb oft schwierig. Für lebenslimitierend erkrankte Kinder und Jugendliche, die zwar einer aufsuchenden Palliativversorgung bedürfen, jedoch keinen Bedarf an einer so intensiven Betreuung wie in der SAPV haben, besteht eine Versorgungslücke. Fazit Die SAPV von Kindern und Jugendlichen sowie von volljährigen Patient*innen, die seit dem Kindes- und Jugendalter erkrankt sind, bedarf einer eigenständigen Versorgungsform mit Vergütungsmodalitäten, die den besonderen Versorgungsbedarf und -aufwand abbilden.
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