Living alone – dying at home? The role of non-kin-carers

CATCH UP WITH SOME OF OUR ‘PAST POSTS’ – TODAY WE’RE REPUBLISHING ‘EDITOR’S CHOICE’ FROM PALLIATIVE MEDICINE OF JUNE 2017 – AND YOU CAN DOWNLOAD THE FULL ARTICLE FREE OF CHARGE FROM OUR WEBSITE . . .

Sabine Pleschberger and Paulina Wosko, both affiliated to the Austrian Interdisciplinary Platform on Ageing, Vienna, Austria, explain the background to a longer article selected as ‘Editor’s Choice’ in the June 2017 issue of Palliative Medicine.

The number of single households has increased vastly over the last decades in Europe. Following Labour Force Survey data, about one-third of all people aged 65+ are living alone.1 With increasing age there is even a higher incidence of living alone. For example, in Austria 59 per cent of all women aged 80+ are living alone (compared to 25.5 per cent of all men in this age group).2 Considering the broad research evidence on the importance of family caregiving to enable older people to die at home, one major question arises: Is it at all possible to die at home if persons live alone?

Sabine Pleschberger (left) and Paulina Wosko pictured with their poster at the 14th EAPC World Congress in Copenhagen, 2015, which inspired them to write this paper for Palliative Medicine

Our paper, now published in the June issue of Palliative Medicine, is based on the findings from an exploratory qualitative study focusing on the role of non-kin-carers in Austria who supported a person living alone at home until their death. We designed and partly wrote the paper while both holding posts at the Institute of Nursing Science and Practice, Paracelsus Medical University, Salzburg. (To access the full-text of our paper, please see the links at the end of this post). We were particularly interested in how people aged 80+ and living alone experienced their involvement and engagement and what kind of support they had. We apply the term ‘non-kin-carers’ to people who take care of somebody with whom they are not in a family relationship outside a formal framework. These non-kin-carers are mainly friends or neighbours.

The exciting journey involved in this research study enabled us to learn about non-kin-carers, who are a widely neglected group within the palliative care discourse. Recruiting interview partners, namely ‘ex-non-kin-carers’, though, was challenging and more time-consuming than expected for several reasons. For example, the retrospective design implied that the caring process had to be finished at the time of the interview. As a consequence, health professionals and/or legal attorneys could not be relied on as gatekeepers as initially expected since they had often already lost touch with the non-kin-carers. In addition, non-kin-carers often thought of their engagement as private and some did not even consider themselves as carers. Concurrently, healthcare providers were not aware of non-kin-carers’ involvement. Only specialist palliative care teams formed the exception to the rule.

This afforded several strategies to get a convenient sample of ex-non-kin-carers. Therefore, finishing this study has been a great accomplishment and the results seem to be of significant interest to the wider research community.

Coming back to the initial research question, whether people living alone will be able to die at home, the answer is: “Yes, indeed, if …” Apart from well-documented prerequisites for allowing death at home, for example, access to 24/7 home care services, we found that primarily one or more non-kin-carer(s) who take(s) over responsibility for some basic issues, not necessarily direct care, are of vital importance.

Yet, many questions still remain unanswered and will be followed in further research on care arrangements of older people living at home with a focus on end-of-life care. We would especially like to include the perspective of non-kin-carers as well as of older people living alone, which would allow us to capture the dynamics of these relationships. ‘Fingers crossed’ that we will get funding and will be able to extend our knowledge in this exciting field.

References

  1. Labour Force survey data 2015.
  2. Statistik Austria 2015 – (2015): Haushaltsprognose 2016.

Read the full article in Palliative Medicine

This blog post relates to the longer article, ‘From neighbour to carer. An exploratory study on the role of non-kin-carers in end-of-life care at home for older people living alone’ by Sabine Pleschberger and Paulina Wosko, published in Palliative Medicine, Vol. 31 (6) 2017, 559-565. DOI 10.1177/0269216316666785. First published online: September 8, 2016.

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Parenting while living with advanced cancer

CATCH UP WITH SOME OF OUR ‘PAST POSTS’ – TODAY WE’RE REPUBLISHING OUR ‘EDITOR’S CHOICE’ FROM PALLIATIVE MEDICINE OF MARCH 2017 – AND THE FULL ARTICLE IS FREE TO DOWNLOAD …

Dr Eliza (Leeza) M Park Department of Psychiatry and Lineberger Comprehensive Cancer Center, The University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA, explains the background to a longer article selected as ‘Editor’s Choice’ in the March 2017 issue of Palliative Medicine.

Dr Eliza M Park

As a practising adult psychiatrist working in oncology, I find that parents with advanced or incurable cancer who also have dependent children can be the hardest to treat. In addition to the physical symptoms, functional limitations, and spiritual distress caused by their disease, these patients also experience extraordinary psychological suffering related to parenting. Parents have immediate and future concerns about their children and profound anguish about their inability to raise their children during their illness and into adulthood. Parental worries about the impact that their death will have on their children can be intense and these worries may shape decision-making about how aggressively to pursue anti-neoplastic treatment options. 1 The intensity of parental worries may also be linked to their co-parent’s mental health in bereavement. 2

Parental cancer is also common. Across many American and European countries, cancer remains a leading cause of early parental loss. In the United States, cancer is the number one cause of non-accidental death for persons aged 25-54 years. Despite the prevalence of parental advanced cancer, there is little research to guide clinicians on how to best meet the unique needs of this patient population. Thus began my foray into clinical research.

With a multidisciplinary team at the University of North Carolina, we conducted a cross-sectional pilot study on the supportive and palliative care needs of parents with advanced cancer. Using in-depth, semi-structured interviews, our aim was to describe the experience of being a parent while living with advanced cancer and to explore how these experiences differed by functional status. Our results revealed that parents with advanced cancer have broad worries about the impact of their illness on their parenting responsibilities and on their children; poorer functional status intensified these psychological concerns. Parents experienced sadness, guilt, and worry about dying before their children reached pivotal life milestones or adulthood. For many of these individuals, identification with the parental role was critical to their approach to cancer treatment decision-making but was rarely discussed with their provider as they assumed they already understood their issues.

Depending on an individual’s prognosis and course of treatments, patients with advanced but incurable cancer are often treated for months or years. For those still raising children at home, this time frame offers an opportunity to discuss parenting-related concerns with their healthcare providers. Ideally, these discussions would inform treatment decisions and prompt parents to take steps to address their psychological concerns. We suspect, however, that this rarely takes place in a systematic manner. However, we remain hopeful that more can be done to alleviate the heartbreak of a parental advanced cancer diagnosis.

References

  1. Check DK, Park EM, Reeder-Hayes KE, Mayer DK, Deal AM, Yopp JM et al. Concerns underlying treatment preferences of advanced cancer patients with children Psycho-oncology. 2016; May 26; doi:10.1002/pon.4164
  1. Park EM, Deal AM, Yopp JM, Edwards TP, Wilson DJ, Hanson LC, et al. End-of-Life experiences of mothers with advanced cancer: perspectives of widowed fathers. BMJ Supportive & Palliative Care. 2016; 6 (4): 437-44.

Read the full article in Palliative Medicine
This blog post relates to the longer article, ‘Parenting While Living with Advanced Cancer: A Qualitative Study’ by Eliza M Park, Devon K Check, Mi-Kiyung Song, Katherine E Reeder-Hayes, Laura C Hanson, Justin M Yopp, Donald L Rosenstein, Deborah K Mayer published in Palliative Medicine 2017, Vol. 31 (3) 231–238. DOI: 10.1177/0269216316661686.

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Read earlier Editor’s Choice posts on the EAPC Blog.

 

#EAPC2019 – SUBMIT YOUR ABSTRACT NOW!
Now’s the time to submit your abstract for EAPC 2019 – 16TH World Congress of the European Association for Palliative Care – 23 to 25 May 2019, Berlin, Germany. Submit your abstract here.  Deadline for submission: 15 October 2018. Register for the congress here.

 

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Understanding funding models in palliative care: Who pays and who provides?

CATCH UP WITH SOME OF OUR ‘PAST POSTS’ – TODAY WE’RE REPUBLISHING OUR ‘EDITOR’S CHOICE’ FROM PALLIATIVE MEDICINE OF APRIL 2017 – AND THE FULL ARTICLE IS FREE TO DOWNLOAD …

Fliss Murtagh, Professor of Palliative Care, Hull York Medical School, UK, and Visiting Professor at the Cicely Saunders Institute, King’s College London, UK, explains the background to a longer article selected as ‘Editor’s Choice’ in the April 2017 issue of Palliative Medicine.

Professor Fliss Murtagh

We are delighted to hear that our recent paper ‘Funding models in palliative care: Lessons from international experience, has been chosen as ‘Editor’s Choice’ for the April issue of Palliative Medicine. Not least because this has been one of the most challenging papers we have ever written!

It began back in 2012 just before the 7th World Research Congress of the European Association for Palliative Care (EAPC), in Trondheim, Norway. We were embarking on a programme of research to understand case mix, complexity, resource use, and outcomes in palliative care. Searching for a better understanding of how palliative care was resourced, we had been reading and finding out about different funding models for palliative care in different countries. Some people could tell us part of the story but it was so often incomplete. It was also hard to find out about specific funding and policy information without talking to the ‘locals’ from each country. So we decided to investigate further, and seek ‘country experts’ from a range of countries to find out more detail . . .

Trondheim: Courtesy of Enrico Strocchi

Amidst the beautiful Trondheim location, we started formally interviewing a range of international colleagues, choosing countries to represent a range of different health systems across Europe. Of course, as the interviews progressed, and the experts started to answer our questions, it became clear that it was even more complex than we had at first thought.

We began to build up a picture of what was happening in each of the countries we included, but the very complexity of our findings made it hard to find a uniform way to describe funding models across every country. Not only did each place have a different way of funding palliative care, but each country also had a very different overall health system, and sometimes several systems working sometimes together or sometimes in competition. A breakthrough came when we discovered a very useful theoretical framework from a Canadian group; this proved to be the key in making systematic sense of our complicated and diverse findings.

We had to go back and re-interview our experts; partly to understand in the context of the theoretical framework, and partly because nothing stands still; the funding of palliative care changes and we needed to update the work. EAPC conferences in Prague, Lleida, and Copenhagen had happened by this time! But after persisting, we were able to report useful findings, highlighting the patterns among funding models across countries.

Some valuable insights emerge; providers of palliative care are rarely paid in a way that directly reflects either individual needs or population needs; inequities in ‘the system’ are often perpetuated by the existing funding models; and most palliative care is funded by an extremely ‘mixed’ economy of charitable, public and private funds, with all the advantages and disadvantages this brings.

A huge thank you to Iris Groeneveld, whose perseverance has been outstanding, and to all our co-authors without whom this paper would not have been written.

Read the full article in Palliative Medicine

This blog post relates to the longer article, Funding models in palliative care – lessons from international experience’ by E Iris Groeneveld, J Brian Cassel, Claudia Bausewein, Ágnes Csikós, Malgorzata Krajnik, Karen Ryan, Dagny Faksvåg Haugen, , Steffen Eychmueller, Heike Gudat Keller, Simon Allan, Jeroen Hasselaar, Teresa García-Baquero Merino, Kate Swetenham, Kym Piper, Carl Johan Fürst, Fliss EM Murtagh, published in Palliative Medicine, Vol. 31 (4) 2017, 296-305. DOI: 10.1177/0269216316689015.

YOU CAN DOWNLOAD THE FULL ARTICLE FREE OF CHARGE  here.

Read earlier Editor’s Choice posts on the EAPC Blog.

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What the social sciences have to offer palliative care

Dr Erica Borgstrom, Lecturer in Anthropology and End-of-life Care, Open University, Milton Keynes, UK, explains the background to a longer article published in the June issue of the European Journal of Palliative Care.

Dr Erica Borgstrom

In November 2017, a group of 20 social scientists gathered for a workshop at the Open University in England to discuss how the social sciences inform palliative and end-of-life care. The original idea for the event came from a discussion I had with other anthropologists and sociologists about how we conduct research and the impact it can have on palliative care. Given the size of the interdisciplinary medical field, it is easy to see how social science work about palliative care can be seen to sit at the margin of this field; however, our research often lies at the core of palliative care’s mission.

Social scientists have been researching ‘end-of-life care’ before it was classified as such and it continues to be an area that influences the shape of the field. A starting point to recognise this is by reference to Glaser and Strauss’ seminal work in the 1960s. Their insight of awareness contexts and trajectories of dying is employed regularly in current thinking about how best to deliver palliative care. (1,2)

Additionally, at the workshop, we discussed how contemporary research in the USA, UK, Australia and New Zealand, for example, is illuminating the ways in which the structure of healthcare systems influences what kinds of care are routinely provided at the end of life and how transitions to palliative care are made. In parts of Europe, research about the interplay between palliative care and euthanasia suggest that they are not a dichotomy when people think about the end of their own life. We discussed therefore how social science research about palliative care not only describes what palliative care is, but can also help articulate the ways – both current and future – in which people experience the end of life.

Both the workshop and subsequent paper in EJPC add to academic theorisation about palliative care, as well as to suggest practical implications for academic engagement in this field. In the paper, we outline three – although there are more – ways in which the social sciences can inform palliative care. These include viewing dying as a process, the use of stories in research and dissemination of research, and applied research. Through this combination of theory and engagement, social sciences can encourage people to challenge what they do and think.

For example, why do we provide care in this way? What does this imply about how we think about our relationship to patients? How does it make the staff feel?From our collective research and experiences we found that there is a need to further explore and collaborate on key factors that inform policy in end-of-life care, and the important and central part social sciences need to play in progressing this field.

To find out more and get involved . . .

  • More about the workshop can be found here.
  • If you’re a social scientist and want to find out more about similar events, join the SOCSCIEOLC@JISCMAIL.AC.UK mailing list.
  • If you work in palliative and end-of-life care, and you’d like to collaborate with social scientists on future projects or events, please connect via Twitter (@ericaborgstrom or #socscieolc) or email us at SOCSCIEOLC@JISCMAIL.AC.UK

Acknowledgments

I’d like to thank my co-organisers of the workshop – Dr Sarah Hoare (University of Cambridge) and Natashe Lemos Dekker (University of Amsterdam) – for their support, and all the participants for their contributions at the workshop. This workshop was supported by funding from the Foundation for the Sociology of Health and Illness and the Association for the Study of Death and Society.

References

  1. Glaser BG, Strauss AL. Awareness of Dying. Chicago: Aldine; 1965.
  2. Glaser BG, Strauss AL. Time for Dying. Chicago: Aldine Transaction; 1968.

Read the full article in the European Journal of Palliative Care

This post relates to the longer article, What the social sciences have to offer palliative care by Erica Borgstrom, Natashe Lemos Dekker and Sarah Hoare, published in the June edition of the European Journal of Palliative Care (EJPC).2018; 25 (3).

 

 

 


Note from the EAPC concerning the European Journal of Palliative Care

We regret to announce that Hayward Medical Communications, the publisher of the European Journal of Palliative Care (EJPC), is closing the journal after 24 years.

Since the launch of the journal in 1994, the EAPC and the EJPC have forged a strong and mutually effective bond. Together, we have provided our members and readers with a wide range of papers, including several seminal EAPC White papers, and the book of abstracts for many EAPC congresses. Our successful collaboration has also led to the publication of numerous posts on this blog contributed by many of the EJPC’s authors, providing a background to their longer articles. The diversity and high quality of the content has enriched our blog and we are deeply grateful to past and present authors, and to our colleagues at the EJPC. A tribute from the EAPC is published in the current issue of the journal.

You can view and download more than 120 posts based on EJPC articles in the special category on the blog for the European Journal of Palliative Care.

Please address any enquiries about EJPC editorial or subscription matters to the publisher at:ejpc@hayward.co.uk (editorial) or ejpc_subscriptions@hayward.co.uk (subscriptions).

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The taming of the chameleon – guidance on Conducting and REporting DElphi Studies (CREDES)

CATCH UP WITH SOME OF OUR ‘PAST POSTS’ – TODAY WE ARE REPUBLISHING OUR ‘EDITOR’S CHOICE’ FROM PALLIATIVE MEDICINE OF SEPTEMBER 2017 …

Dr Saskia Jünger, senior research associate at the Cologne Center for Ethics, Rights, Economics, and Social Sciences of Health (ceres), Germany, explains the background to her longer article selected as ‘Editor’s Choice’ in the September 2017 issue of Palliative Medicine.

Dr Saskia Jünger

The Delphi technique1 is widely used for the development of guidance in palliative care, having an impact on decisions with relevance for patient care. Having been involved in the realisation of diverse international consensus-building processes using the Delphi technique – either as the coordinator or as a co-researcher – I have had the opportunity to witness the power of this method for the production of scientific knowledge in palliative care, and I have come to value its fascinating nature.

Due to its methodological versatility, the Delphi technique reminds me of a chameleon; its design can be flexibly adapted to diverse research needs. This characteristic may have contributed to a certain arbitrariness regarding its application: “In their enthusiasm, some analysts have urged Delphi for practically every use except cure of the common cold.”

However, the credibility of a Delphi study depends on the rigour of its implementation. We need to be mindful of this when using the technique since any decisions made as a result of a Delphi study may impact on clinical practice. The technique is widely applied in palliative care research, e.g. for the development of clinical guidance and standards for service delivery; health policy recommendations; for curriculum development; or for the identification of quality indicators. Therefore, a sound study conduct, as well as transparent reporting of methodological details and (interim) results, is key for the reliability of the resulting ‘product’. While some guidance had been proposed in the literature for enhancing the quality of Delphi studies, clear recommendations and a reporting standard for their publication had not been available. This motivated my co-authors and me to examine more systematically the use of the Delphi technique for the production of consensus, knowledge, and guidance on good clinical practice in palliative care.

“The Delphi technique reminds me of a chameleon; its design can be flexibly adapted to diverse research needs. “
(Photo courtesy Shobhan Tudu via Wikimedia Commons).

In our systematic review, we found substantial variation about how thoroughly studies were conducted and how transparently these were described in the published articles. In particular, the crucial moment between two Delphi rounds – what happens with the outcomes of the previous round and how these inform the preparation of the next survey round – was not always clearly set out. However, we also identified examples of good practice among the studies included in our review. These were encouraging models of how to design and present a Delphi study, even in view of restricted time, funding, or the word limits of scientific articles.

Our findings inspired us to propose a standard for Conducting and REporting of DElphi Studies (CREDES). We hope that the recommendations can serve as a guide for researchers undertaking and publishing Delphi studies, as well as for reviewers and journal editors when evaluating the quality of the study design and the transparency of reporting. It was a particular honour for my co-authors and me that our guidance was included in the reporting guideline database of the Equator Network.

References and Links

 

Read the full article in Palliative Medicine . . .

This post relates to a longer article, ‘Guidance on Conducting and REporting Delphi Studies (CREDES) in palliative care – recommendations based on a methodological systematic review’ by Saskia Jünger, Sheila Payne, Jenny Brine, Lukas Radbruch and Sarah Brearley, published in Palliative Medicine, Vol 31 (8): September 2017, p684-706. First published online: February 13, 2017; DOI: 10.1177/0269216317690685.

How to download this article free of charge from the EAPC website.
EAPC members and registered users of the EAPC website can download all ‘Editor’s choice’ papers free of charge from the EAPC website at www.eapcnet.eu 

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Palliative care for everyone, everywhere: International Palliative Care Network Poster Exhibition – 2018

Dr Parag Bharadwaj is the founder of Palliative Care Network, an online platform that promotes the exchange of information and communication across borders. Here, Parag explains how palliative care professionals can showcase their work to a global online audience by entering this year’s poster exhibition.

Palliative Care Networka non-profit organisation, is a volunteer-based grassroots movement. It provides a platform for palliative care professionals to assist each other and improve patient care by promoting the free flow of information across borders. Over the years, Palliative Care Network has impacted millions of lives globally.

Steve Norris MD, Board Member, Palliative Care Network, with Julie Ling, CEO, EAPC.

Among the activities and resources we offer is an annual online poster exhibition, endorsed by the European Association for Palliative Care (EAPC), to facilitate the free flow of knowledge across the globe to promote palliative care.

Share your work and spread information across borders …

The International Palliative Care Network Poster Exhibition – 2018 will allow palliative care professionals to network and exchange ideas and to translate knowledge to practice. We encourage individuals, programmes and institutions, universities and organisations to submit and showcase their works and achievements. Participation and access are free.

The first author of posters will receive an e-certificate and there are sponsored awards. Posters that were accepted for the 2018 EAPC World Research Congress will be automatically accepted! Works submitted to other conferences will be considered. Posters will be reviewed by a scientific panel. The exhibition is endorsed by many national and international organisations.

Winning poster 2017 International Palliative Care Network Poster Exhibition: First prize was awarded to Dr Tim Luckett, a senior lecturer in the Faculty of Health at the University of Technology Sydney (UTS), Australia.

Comments from previous participants testify to how the knowledge shared brings about changes in practice that in turn lead to improved care of patients.

“This will improve [the] teaching of the medical students as the information has improved my knowledge very much.” Participant from Africa.

“The knowledge gained here will help direct future research.” Participant from UK.

“It is very meaningful for those who are interested in palliative care, particularly from developing country like myself. Keep going!”  Participant from Africa.

“I will see patients from different cultures with a new point of view as far as their end of life care needs are concerned.” Participant from USA.

“They have made me change my attitude as I care for the patients. They make me look at the patient in totality.” Participant from Africa.

Palliative care professionals join the field with the desire to help their patients. The poster exhibition offers a great opportunity to make a world of difference for someone across the globe. Please submit your poster now!

Links

 

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From well-equipped cohort to future research leaders: Preparing the next generation palliative care researchers

In light of the ever-ageing palliative care work-force, including research, a critical question relates to the development of research capacity. There is an urgent need to consider how we prepare the next generation researchers (Philip Larkin et al., 2016).

Joni Gilissen, Robrecht De Schreye, Arno Maetens, Lenzo Robijn, Steven Vanderstichelen, Romy Van Rickstal and Maarten Vermorgen represent a group of 27 PhD candidates working in palliative care research in Belgium. In this blog post, they shout out to you, highlighting how they feel junior researchers can be optimally prepared in order to advance palliative care in their future careers.

Clockwise: Joni Gilissen, Steven Vanderstichelen, Robrecht De Schreye, Arno Maetens, Lenzo Robijn, Maarten Vermorgen and Romy Van Rickstal.

To improve future research in the palliative care domain, recruiting young potentials is not enough. Junior researchers need appropriate training to be future leaders in the field. In 2015, Professor Catherine Walshe wrote an EAPC blog post advocating for people to engage in a PhD in palliative care. Besides the necessary engagement in the topic and the drive to persevere throughout the inevitable ups and downs of a PhD project, she additionally promotes training in research design and methods in palliative care. While we agree, we wish to highlight some additional elements that have helped us as researchers throughout our PhD trajectories and that we believe are essential to a successful career. These are all based on our own experiences.

  1. Start mapping out those strengths and weaknesses

As Professor Walshe also highlights, we all start fresh. End-of-life care research includes a vulnerable patient population, for whom research raises distinct methodological, ethical and clinical challenges that exceed the qualifications students have gained from their graduate degree. Research in this field requires you to continuously develop your skills in and expand your knowledge of different palliative care research methodologies, multidisciplinary approaches, ethics, good clinical practice, and cross-country comparisons. It requires an understanding of palliative care concepts, developments and services, and a well-formed set of organisational and networking skills. We urge you to take the time to make a personal SWOT analysis, in consultation with your supervisor, at the very beginning of your career.

Ask yourself what advantages you have (eg skills, certificates, connections) in comparison to others? (Strengths); What are negative work habits? What do you lack? (for example, while others are more experienced in clinical practice such as nursing or medicine, psychologists or sociologists received more training in research methodology) (Weaknesses); Who can help you? What is lacking in literature or practice? (Opportunities); What obstacles are ahead? (Threats). Identifying weaknesses and opportunities can help you target specific training and figure out how your work may contribute best to society.

  1. Research should always extend your comfort zone

Don’t stay within the boundaries of your own research group, not even your own domain. Interdisciplinary and interregional teamwork and collaboration should be promoted from the start of the PhD. This can mean including experts from different research departments and clinical practice into a project group, so they may frequently provide feedback on both the PhD project and the research trajectory. If you are able to, do a research visit abroad or attend conferences: connect and work together with others. Being exposed to different research methodologies and datasets gathered in different countries and from multiple perspectives contributes to making an experienced and well-rounded researcher. Supervisors should take an active stance in such matters. Attending a conference as a PhD candidate for example, can be quite impressive and the rewards you gain from attending are highly dependent on the people you meet. Supervisors, often with a well-established social network, can aid their PhD candidate greatly in connecting with fellow researchers.

  1. Immerse yourself in the care practice you’ll be writing about

Much of end-of-life care research is rooted in clinical experience, and we strive to do research that is relevant for patients, caregivers, policy and practice. Opportunities to do site visits or a clinical rotation in different care settings – and the integration of such learning experiences into your PhD programme – familiarise you with the complexities of end-of-life care practice. As such, you are able to understand the intricacies of caring for people near the end of life and to further develop the essential attitude to be open to practice-based solutions, to be curious and to have a critical outlook. This is something that is invaluable when interpreting research results, determining future research priorities or appreciating quality of care improvement initiatives.

  1. Scientific publications are just half the work

PhD candidates should be supported in the societal dissemination of aspects of their research that can be useful for guiding practice and policies. Learning to write for different audiences and translating and disseminating their work should be a standard part of their curriculum. Academic articles do not belong behind a paywall and PhD thesis books should not be hidden away in a dusty bookcase in some long-forgotten corner of the research department. These should be used to produce recommendations across Europe. In addition, from the second year of the PhD trajectory and onwards, we advocate the opportunity for PhD candidates, if they are willing, to support their supervisors in teaching.

  1. Start thinking about the future before the end

The future career of a PhD candidate is often unsure and an academic career is not always guaranteed. Supervisors should allow you to carve out time for personal career development in the last year of your PhD trajectory. Schedule a one-to-one meeting once a week or twice a month to discuss follow-up funding and ways to develop a competitive track record (by targeting high-impact journals, working independently, building a support system in- and outside the faculty). Passionate PhD candidates are plentiful, but senior academic appointments in palliative care are still scarce across the EU. To provide more stability to researchers in general, there should additionally be more funding mechanisms in palliative care research overall.

Several of the recommendations made are partly up to the PhD candidate’s willingness and drive to take initiative. Nevertheless, supervisors should actively seek to ignite enthusiasm and curiosity in their students. Being mentored with passion in itself goes a long way.

While many aspects of research are ever-evolving and complicated, we hope this post will contribute to PhD guidance to provide new generations of European palliative care researchers with the essential baggage to influence future policy and practice.

Reference

  1. De Nooijer Kim, Dhollander Naomi, Dierickx Sigrid, Dombrecht Laure, Faes Kristof, Grant Matthew, Honinx Elisabeth, Jennings Nicholas, Mertens Fien, Miranda Rose, Paque Kristel, Piette Veerle, Scheerens Charlotte, Scherrens Anne-Lore, Tanghe Marc, van Dael Annelien, Vanbutsele Gaëlle, Vandenbogaerde Isabel, Verhofstadt Monica, Verkissen Mariëtte. More information about these PhD candidates and their research can be found at www.endoflifecare.be or @EoLC_research.

To view earlier posts about research in palliative care, check out the Research category on the EAPC Blog.

EAPC 2019 – 16THWorld Congress of the European Association for Palliative Care –  Global palliative care – shaping the future – 23 to 25 May 2019, Berlin, Germany #EAPC2019

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