Van 16 tot 19 november jl. vond in Rome het '3nd Congres of Paediatric Palliative Care – a global gatering' plaats. Meer dan 300 deelnemers uit de hele wereld deelden tijdens deze drie dagen ervaringen en nieuws uit de kinderpalliatieve zorg. Nederland was met een zestal presentaties goed vertegenwoordigt op het congres.
Resultaten en ervaringen uit vier innovatieve Nederlandse projecten en daaraan gekoppelde onderzoeken werden door middel van (poster-) presentaties gedeeld: Het Individueel Zorgplan Kinderpalliatieve Zorg, de manier van opzetten van de Regionale Netwerken Integrale Kindzorg en twee onderzoeken verbonden aan de ontwikkeling van het Emma Thuis team kregen ruimschoots de aandacht. Uit de vele gesprekken bij de posters en na de presentaties bleek, dat men in vrijwel alle landen nog bezig is met het komen tot een goede organisatiestructuur voor kinderpalliatieve zorg, dat de ontwikkelingen veel tijd vragen en de uitdagingen groot zijn.
Dr. Erna Michiels (Erasmus MC / Emma Kinderziekenhuis) gaf een inspirerende presentatie over een recent door haar uitgevoerd onderzoek waaruit blijkt dat de misschien wel grootste opdracht waar wij in Nederland voor staan, het bewerkstelligen van een ‘mind-set’ is, daar waar het gaat om de definitie en toepassing van kinderpalliatieve zorg.
Het programma met een samenvatting van alle presentaties, waaronder die van dr. Erna Michiels, en alle posters zijn te vinden op de website van het Congres.
Hier een overzicht van inspirerende studies gepresenteerd in Rome:
- Understanding the Factors that Invluence Parents as they Plan and Manage their Child’s end of Life Care (Karen Brombley, Helen & Douglas House, UK)
- Improving the National-wide outcomes for children and families supported by Paediatric Palliative Care (dr. Antony Herbert et al., Brisbane, Queensland, Australia)
- Sharin the learning from an innovative perinatal hospice service in UK – an integrative approach ensuring quality palliative care from inside the womb (E. Bleasdale et al., UK)
- ChiSP – the challange of accurate national data requires an organisation’s strategic response (dr. Pat Carragher, Medical Director of the Children’s Hospice Association Scotland)
1. Understanding the Factors that Influence Parents as they Plan and Manage their Child's End of Life Care
Brombley K., Helen & Douglas House / John Radcliffe Hospital, Outreach Team, Oxford, United Kingdom
Background and aims: There is an almost universal focus on home as place of death as the preferred outcome in paediatric palliative care. By contrast, data suggests that home is rarely achieved. There has been little research into why this discrepancy exists, and whether it matters. There is also a lack of understanding of parents' choices and priorities for end of life care changing over time, and of the different factors (positive and negative) influencing these choices.
Methods: A practice inquiry which critically analysed personal reflective accounts of the end of life care of children known to the practitioner to ascertain the factors influencing parents as they made choices and plans around their child's end of life care.
Results: A multitude of factors were found to influence parental choices. While an initial recognition of the importance of normality (as distinct from the place 'home') influenced the majority of cases, the interplay between all influencing factors highlighted will be demonstrated. An understanding of how all these factors can positively or negatively impact on the families' desire for normality, and a recognition of a hierarchy of significance- eg unmanaged pain will always 'trump' other factors leading parents to move to a location where the pain can be managed. This presentation explores this hierarchy and how enabling families to understanding these competing factors can support parental choices and coping.
Conclusion: In the context of discussions on compassionate care, this presentation will offer a different perspective to inform practitioners as they enable parents to plan for the end of their child's life.
2. Improving Nation-wide Outcomes for Children and Families Supported by Paediatric Palliative Care. A National Quality of Care Collaborative
Herbert A., Baggio S., Slater P., Pedersen L.-A., Delaney A., Quality of Care Collaborative (QuoCCA) for Paediatric Palliative Care , Lady Cilento Children's Hospital, Paediatric Palliative Care Service, South Brisbane, Australia
The overarching aim of this National collaborative is to promote high quality palliative care (PC) provided to children in close proximity to their home through education initiatives, evaluation and research. This is a mixed methodology study with different phases.
1. Baseline learning needs/capability involves an on-line learning needs analysis (LNA) and a Paediatric Palliative Care capability tool (PPC-CT) developed and used to determine a baseline of health clinicians in regional, rural and remote settings. Results from the LNA will develop education modules.
2. Educational initiatives and evaluations (Impacts) includes a 'pop-up' model for case consults and scheduled education sessions developed and reviewed with confidence surveys, using a 5 point Likert scale.
3. Consumer & Health Clinician Engagement (Perspectives) uses the Discovery Interview methodology to better understand parents', clinicians' and educators' perspectives relating to the service and educational initiatives. 152 participants have completed the LNA to date, with different findings from another study. Phase 2 indicates a positive impact on health clinicians' confidence levels. Phase 3 is pending ethics approval. The LNA results are indicative of the larger and diverse participant group. Educational sessions led to improved confidence for knowledge of resources, management of a new referral with PC needs and management of fear/anxiety. The highest average difference in paired pre/post confidence levels was for management of a new referral. Incidental education has led to unexpected networking benefits within acute settings. Given that each state has its own ethics committee, these processes were longer than anticipated. Funding for this project is limited and plans for a legacy are in place such as a website, education modules and mobile app. Funding from the Department of Health (Commonwealth) for nurse, allied health educators and medical fellows enabled these national initiatives.
3. Sharing the Learning from an Innovative Perinatal Hospice Service in the UK- An Integrative Approach Ensuring Quality Palliative Care from inside the Womb
Bleasdale E., Henry L., Dickins S., Branson P., Burton S., McKeating C., Martland C., Krastins C., Lyles L. Forget Me Not Children's Hospice, Russell House, Huddersfield, United Kingdom
Due to advances in imaging technology and routine screening many life shortening fetal anomalies are detectable in the early antenatal period.
Whilst this allows families the opportunity to make extremely difficult decisions surrounding the progression of the pregnancy, families report a vast lack of support when deciding to continue the pregnancy in the knowledge that their baby may die before birth, during birth or shortly after.
In March 2014 the hospice was successful in securing funding for a one year Perinatal In-reach project with its initial aim of working more closely with regional neonatal units and facilitating choice for families.
Due to the success of the first years project the hospice saw a considerable increase in referrals and interest in it ́s services, in particular the support that could be offered for an early detection , in-utero baby with a life shortening anomaly.
In the 12 months prior to the project the hospice received one neonatal referral. In the past 24 months the hospice has supported 24 neonatal families and 29 families in the antenatal period.
As a result of the continuing interest and rise in referrals into our perinatal service the hospice has been fortunate enough to have secured a further three years of funding, enabling further development of our specialist perinatal service.
Offering families the opportunity to access specialist perinatal palliative support from point of diagnosis (whether in the antenatal or neonatal period) has immense benefits to all involved. It allows for an individualised, consistent and integrative approach to care, ensuring that families are offered the choices of place of care, place of death and the services and support they feel most beneficial to them as a family, resulting in a more compassionate and positive experience.
4. The Challenge of Accurate National Data Requires an Organisation ́s
Strategic Response Carragher P. Children's Hospice Association Scotland, Central Services, Edinburgh, United Kingdom
Background: The accurate knowledge of the number of babies, children and young people (CYP) with palliative care needs in one whole country has only recently been published. Literature reviews show this to be unique as information about their stage of condition, underlying condition, gender, ethnicity and deprivation factors was also collected. This has necessitated a strategic response from a national children's hospice organisation. This study identified that there were significantly higher numbers than previously estimated, with 15404 in the 0-25 year age group. The report also was able to offer some palliative prioritisation with prevalence considered under the following subgroups: stable, unstable, deteriorating, and dying with 2201 in the last of three groups. 73% of deaths were in hospital, which has is causing the organisation to further explore its model of care.
Method: The organisation is presenting the study results to the Parliament's Cross Party Group for Palliative Care, national networks for children's palliative care and reporting it in the wider media, as well as to health board and joint integrated boards. The report is also being disseminated across the UK and internationally. It has engaged the resources of an academic economic analyst to explore the value of its care, and it will continue to investigate how to provide care to a greater number of CYP, and it will continue to work closely with principal investigators of the study.
Results: The effect of the above is currently being closely monitored, but there are already emerging trends particularly within neonatal palliative medicine, but across all ages, with the number of referrals to the children's hospice organisation already increasing but with a greater range of methods where care is being offered.
Conclusions: The study is already influencing national practice. Further dissemination is being undertaken to ensure its influence is optimal, and this will be reported at the conference