Dr Marieke Groot, Senior Researcher/Assistant Professor, Radboud University Medical Center, expertise center for palliative care, Nijmegen, the Netherlands, writes about the patient study, part of the EU-funded project INSUP-C, that she is directing.
In thinking about and preparing for this blog, I came across ‘Palliative Stories’, the EAPC’s blog series from the perspective of patients and family carers, and I realised that those situations are the foundations of the study we are performing. Too often, and it still occurs nowadays, patients have to repeat their case and disease history over and over again and experience care that is not well coordinated. On the other hand, palliative care is developing rapidly and initiatives in which organisations and professionals work together aiming to give palliative care in a seamless manner (integrated care), are becoming more prevalent.
However, we don’t know how these initiatives work on a day-to-day basis and how patients and their informal caregivers experience the care provision. For that purpose, we therefore set up a mixed methods study (qualitative as well as quantitative methods) in five countries, Belgium, Germany, Hungary, the United Kingdom and the Netherlands. If we get to know how Integrated Palliative Care Initiatives (IPC initiatives) work and which elements constitute a good or a rather less good evaluation, we might be able to support existing as well as new initiatives to align their structure and processes to the wishes and needs of their palliative care patients.
In January 2013, we had our first exchange of thoughts with all project partners about how to organise such a large and challenging longitudinal patient study. Between this kick-off meeting and the inclusion and interview of our first patient and informal caregiver (in May 2014), an intriguing and tight schedule engaged our time and attention. In this period we wrote an ethical protocol (with country-specific adaptations), went through five different ethical procedures, formulated criteria on which we were able to select three to five IPC initiatives per country, selected questionnaires, wrote interview protocols for the patient, as well as the caregiver interviews, and followed a self-developed training for aligning our interview methods. All this, combined with regular (sometimes even on a two-weekly basis) Skype- or face-to-face meetings, transformed us – the researchers from the five countries – to a smoothly functioning team; a necessity for carrying out a study like this.
By the end of August this year, we had included our last patients and informal caregivers, so this autumn we will finish the data collection period. As is usual in qualitative research, data analysis starts directly after the first moment of data collection. Thus, our team has already developed a codebook, which is constantly refined after analysing new interviews.
Looking back on the previous 34 months, I’m really proud to say that a group of more than 10 researchers from five different countries and cultures, several professional backgrounds and experience levels have made it possible to do a study like this. I’m looking forward to the moment that we can present the results of our efforts (and those of all the patients and caregivers that unselfishly participated), and through these will be able to contribute a little to the further development of palliative care internationally.
Links and resources
- INSUP-C – the website includes several document resources to download.
- Read more blog posts from other INSUP-C members here.
- Follow the EAPC Blog series: Palliative Stories.
Look out for more posts from members of INSUP-C in the coming months on the EAPC Blog.
EAPC Early Researcher Award – online submission open now!
This year we will award three separate awards: one for early researchers, one for researchers at post-doc. level and one for clinical researchers. Deadline for applications: 13 December 2015. To download eligibility criteria and an application form, please visit the congress website (Choose ‘Scientific’ and follow links to ‘Early Research Award’). Read posts from previous ERA winners here.