Spice of life: How can we explore and measure the quality of life of children facing life-limiting conditions

On 17 December 2020, Marie Friedel will defend her PhD in public health, as part of a virtual scientific symposium with families, paediatric liaison teams and international leaders in paediatric palliative care. The symposium is free and all are welcome to attend. Here, Marie explains what inspired her and her colleagues to start a research project called MOSAIK (Move to Open Shared Advanced Interventions for Kids with life-limiting conditions) that became the focus for her PhD.


Marie Friedel.

As a paediatric nurse I had the privilege to work from 2008 to 2011 in a transmural paediatric palliative care (PPC) team in Brussels, called the Paediatric Liaison Team (PLT). PLTs linked to university hospitals ensure continuity of care across all healthcare settings and are structurally funded since 2010 by the Belgian health system.

During those years, I was deeply touched by a smart, 18-year-old patient, suffering from several end-stage cancers. Once, he gave me a gift, a CD with five different versions of the song Little Boxes from Malvina Reynolds and said:

You and your team didn’t look only at my illness, at my organs. So many times, we are tagging people and put them in different boxes, instead of seeing them as a whole.”

I received his gift as a legacy that would remind me in my future projects to always keep that in mind.

At that time, there was no basic training in paediatric palliative care in Belgium. In 2012, with 15 experts from different fields, we launched an interdisciplinary PPC training at the Haute Ecole Vinci in Brussels with 12 participants. That same year I moved to Italy for family reasons. Nevertheless, I had the opportunity to continue to coordinate the PPC course and was honoured to present the results of the assessment of this first course at the first ICPCN (International Children’s Palliative Care Network) Conference on 13 February 2014, in Mumbai (India).3  On that same day, Belgium voted in the extension of euthanasia to minors –  a law that conflicted with my experience as a liaison nurse. Why was this law voted in? Is it to better respond to a child’s suffering? Shall we acknowledge that PPC has some limits? Does PPC really improve quality of life (QoL) as its definition states? I realised that QoL wasn’t systematically evaluated in PPC, but how was QoL even defined? As it is a very subjective construct, how can we explore and measure it among children with life-limiting conditions? I felt a moral distress and was encouraged by Professor D. Jacquemin to pursue my reflections by writing down my questions and confronting them with others.1-2

Living peacefully with my family near the wonderful Lago Maggiore in Italy for the next few years, why should I bother to start a PhD? With whom? Where? What about funding? Everything seemed surreal, but after long negotiations, the PhD proposal in public health was accepted in February 2016, under the supervision of Professors I Aujoulat and JM Degryse at IRSS-UCLouvain, with funding from the Fonds Marguerite-Marie Delacroix. I started to fly frequently between Milan and Brussels to start from scratch the research we called MOSAIK (Move to Open Shared Advanced Interventions for Kids with life-limiting conditions).

Award-winning poster at 16th EAPC World Congress 2019.

Within a collaborative approach with each PLT in Belgium, four sub-studies focusing on children’s and parents’ QoL were conducted. Most of them were published.3-6 One of these, commissioned by the Brussels federal palliative care platform, and funded by the ‘Fondation contre le Cancer’, revealed insufficient access to PLTs for children with complex chronic conditions. Those results were presented at the Brussels regional Parliament in December 2018 and our poster received an award at the 16th World Congress of the European Association for Palliative Care in Berlin in May 2019.

If you want to know more about the results of those four sub-studies focusing on the MOSAIK studies, you’re welcome to attend my virtual PhD public defence on 17 December at 5.00 pm (UTC+1), entitled: ‘Spice of Life: How can we explore and measure the quality of life of children facing life-limiting conditions. Results and challenges of the MOSAIK study in Belgium’.

This defence is included in a scientific symposium (webinar) where families, PLTs and international leaders in PPC (Prof Lorna Fraser, Prof Julia Downing and Dr Richard Hain) will share their expertise. More Information here.  The webinar is FREE but you must register here before 11 December 2020.

I hope to see you there!

References

  1. Friedel M. Does the Belgian law legalising euthanasia for minors really address the needs of life-limited children? Int J Palliat Nurs. 2014 Jun;20(6):265-7. doi: 10.12968/ijpn.2014.20.6.265.
  2. Clément de Cléty S, Friedel M, Verhagen AA, Lantos JD, Carter BS. Please Do Whatever It Takes to End Our Daughter’s Suffering! Pediatrics. 2016;137(1). doi: 10.1542/peds.2015-3812.
  3. Friedel M, Brichard B, Fonteyne C, Renard M, Misson JP, Vandecruys E, Tonon C, Verfaillie F, Hendrijckx G, Andersson N, Ruysseveldt I, Moens K, Degryse JM, Aujoulat I. Building Bridges, Paediatric Palliative Care in Belgium: A secondary data analysis of annual paediatric liaison team reports from 2010 to 2014. BMC Palliat Care. 2018;17(1):77. doi: 10.1186/s12904-018-0324-2.
  4. Friedel M, Aujoulat I, Dubois AC, Degryse JM. Instruments to Measure Outcomes in Pediatric Palliative Care: A Systematic Review. Pediatrics. 2019;143(1):e20182379. doi: 10.1542/peds.2018-2379.
  5. Friedel M, Gilson A, Bouckenaere D, Brichard B, Fonteyne C, Wojcik T, De Clercq E, Guillet A, Mahboub A, Lahaye M, Aujoulat I. Access to paediatric palliative care in children and adolescents with complex chronic conditions: a retrospective hospital-based study in Brussels, Belgium. BMJ Paediatr Open. 2019;3(1):e000547. doi: 10.1136/bmjpo-2019-000547.
  6. Friedel M, Brichard B, Boonen S, Tonon C, De Terwangne B, Bellis D, Mevisse M, Fonteyne C, Jaspard M, Schruse M, Harding R, Downing J, Namisango E, Degryse JM, Aujoulat I. Face and Content Validity, Acceptability, and Feasibility of the Adapted Version of the Children’s Palliative Outcome Scale: A Qualitative Pilot Study. J Palliat Med. 2020 Jul 15. doi: 10.1089/jpm.2019.0646.

More about the author

Marie Friedel is a scientific collaborator at the Institut de recherche santé et société (IRSS), Université catholique de Louvain, Brussels, Belgium and a lecturer at Haute Ecole Léonard de Vinci, Brussels, Belgium. Contact Marie by email or via LinkedIn And follow her on Twitter @MarieFriedel

Links

Save the date! 17TH EAPC World Congress Online #EAPC2021 takes place online on 6 to 8 October 2021. More information here. An entire day will be dedicated to Paediatric Palliative Care Day. Registration is now open. Abstract submission opens 1 January 2021.

This entry was posted in CHILDREN'S PALLIATIVE CARE and tagged . Bookmark the permalink.

1 Response to Spice of life: How can we explore and measure the quality of life of children facing life-limiting conditions

  1. Pingback: Notizie dalla EAPC | SICP

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