Let’s create Compassionate Communities for the future!

In our Palliative Care and Public Health blog series, contributors explore the pressing issue about how palliative care could become part of public health as well as a health care priority. Marie-Charlotte Bouësseau, Elizabeth Gwyther & Allan Kellehear reflect on the challenges which lay ahead and the potential for change.


Photos of Marie-Charlotte Bouësseau, Elizabeth Gwyther & Allan Kellehear.
Marie-Charlotte Bouësseau, Allan Kellehear & Elizabeth Gwyther.

The World Health Assembly resolution 67.19 (1) adopted by all Member States in 2014 recognized palliative care as an ‘ethical responsibility of health systems.’ They make it clear that this responsibility is shared by many stakeholders including clinicians, policy makers and every sector of civic society. This has become known as creating Compassionate Communities. To this end, the World Health Organization (WHO) has published several documents to guide government health services in the integration of palliative care into health systems, including ‘Integrating palliative care and pain relief into primary health care’and ‘Integrating palliative care and pain relief into pediatrics’. However, making our common aim to build Compassionate Communities a reality requires greater policy commitments from our local governments, employer groups, schools and neighbourhoods. The shared responsibility for the provision of palliative care between clinical services and communities is essential to ensure holistic care which meets the needs of individuals as well as equitable access to palliative care from the early stage of life-threatening diseases. Learning about how to work with civic sector partners in order to become a Compassionate City or community is essential (2).

Progress has been made towards this vision over the past years, even in resource-poor settings. The recent WHO publications ‘Assessing the development of palliative care worldwide: a set of actionable indicators’ and ‘Quality health services and palliative care’  provide guidance in monitoring the implementation of quality palliative care. The publication on palliative care indicators describes the strengthening of palliative care services as building a house with ‘Empowerment of People and Communities’ as a foundation together with appropriate Health Polices and Research. The walls of the house are ‘Use of Essential Medicines’ and ‘Education and Training’, and the roof of the house sheltering people in need of palliative care is ‘Provision of Palliative Care’ within Integrated Health Services. However, the foundation of the house – the equal participation, support and end of life literacy of communities, continues to receive less attention. Only by inviting local governments, employer and faith groups, schools and neighbourhoods into a discussion about what THEY can do as palliative care providers – providing practical social, psychological and spiritual supports – will we be able to empower them to be our true partners. Because without empowering communities as a basic partner in the provision of palliative care, aspirations of quality, sustainability, and continuity of care will not be realised, nor will the diverse needs of individuals receiving palliative care be truly met. Without full community participation in palliative care as co-providers of care in partnership with health services full integration of public health with palliative care will remain elusive. This will mean a failure to support the far greater time that people spend away from their healthcare services while dying, caregiving or grieving. We will fail the public health mission of caring for people at the sites where they live, love, work and play.

This health promotion dimension of palliative care remains a challenge for a genuine integration of public health and palliative care policy and practice because of the persistence of thinking of palliative care as solely clinical care, and as a service to be performed in the last weeks of life. But palliative care is more than our clinical work. Health and wellbeing are just as important as symptom management, and grief and bereavement are everlasting experiences that require everlasting responses. The sustainability of our everlasting responses must be driven by our civic institutions. Although implementation of these principles grows everyday, the need for this message to be spread remains urgent. This change is here, but your voice can help spread that change.

Ask your local palliative care service or your local palliative care professional association – what are our Compassionate Community initiatives for health-promoting palliative care in our region? As the whole society needs to be included in the ‘ethical responsibility of all health systems’(1), international organisations such as WHO can work with other key partners in countries to raise community development to an equal place alongside current policy emphasis on health service development. Only then can we truly fulfil our aim of quality of life until the end of life.

References

  1. Sixty-seventh World Health Assembly ‘Strengthening of palliative care as a component of comprehensive care throughout the life course’ May 2014 Resolution 67.19
  2. Abel J., Kellehear A 2022 Oxford Textbook of Public Health Palliative Care. Oxford University Press, Oxford.

Links and resources

  • The EAPC Reference Group on Public Health and Palliative Care have a special EAPC blog series on public health. Read the blogs here.
  • The End-Of-Life Care research group is hosting the 7th international Public Health Palliative Care International conference ‘Democratizing caring, dying and grieving: participation, action, understanding and evaluation’. Bruges, Belgium, 20 – 23 September 2022. Find out more here.
  • The End-Of-Life Care research group Public Health & Palliative Care Research Summer School is taking place on 14 to 17 September 2022, in Ghent, Belgium.

About the authors

Marie-Charlotte Bouësseau is Team Lead in the Department of Integrated Health Services at the World Health Organization.

Elizabeth Gwyther is Emeritus professor of palliative care at the University of Cape Town, previous chair of the Worldwide Hospice Palliative Care Alliance and a consultant for WHO. Twitter: @lizhpca

Allan Kellehear is a clinical professor with a joint appointment in the College of Nursing & Health Sciences and The Robert Larner College of Medicine, University of Vermont, USA.


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Economics, Wikipedia and cricket…an interview with #EAPC2022 award winner Dr Peter May.

One of the many highlights from last week’s 12th World Research Congress Online was the EAPC Researcher Awards. Awarded jointly by the EAPC and the EAPC Research Network, these awards recognise and support the work of scientists and clinicians in the field of palliative care who make an outstanding contribution to research and clinical practice. Today we are delighted to hear from the joint winner of the #EAPC2022 EAPC Post-Doctoral Award, Dr. Peter May. Peter is a Research Assistant Professor in Health Economics at Trinity College Dublin in Ireland.


Photo of Peter May
Dr. Peter May

Thank you for being interviewed for the EAPC blog!  Can you tell me what was your inspiration for a career in palliative care?

I started in palliative care by chance. After an undergrad degree in economics and an MSc in public policy, I worked for a few years in very wide-ranging research roles: transport, education, sport and others. Then in 2010 Trinity College Dublin wanted a researcher for policy analysis and literature reviews in ‘palliative and end-of-life care’. I had the methods skills but had never heard of palliative care – I began my interview prep by reading the Wikipedia article.

But once I got the job, inspiration was in abundant supply. It very quickly became apparent that this is a uniquely challenging and rewarding field, with not nearly enough research activity. For a pre-doctoral researcher in search of a focus, this was a heady mix: the promise of doing something new and intellectually adventurous, and making a difference by addressing unusually large, increasingly urgent evidence gaps.

Who have been your main influences?

I’ve since met and worked with countless wonderful people.  My first manager at Trinity was Professor Geralyn Hynes. She has a mix of qualities that is perhaps particularly common in nurses: smart, industrious, protective of her team, and flintily sceptical in the face of those with too high an opinion of themselves. I learned a lot about palliative care, but also about following the evidence and not the agendas of others. My PhD and post-doc mentors were Professor Charles Normand, who more or less started the economics of palliative care as a field, and Professor R. Sean Morrison, who judiciously combines unstinting generosity with bad jokes about our respective football teams.

As I’ve become more established, I increasingly find inspiration outside academia in the ‘real’ world. It’s one thing to know in principle that we’re trying to improve experiences for people with serious illness and their families, but it’s quite another to grasp the full meaning of why that is so needed. The emergence of public patient involvement in research is critical in this regard because it can help us to augment economic knowledge with understanding. I am increasingly convinced that we must involve patient, carers and the public throughout the research cycle if we are to bridge the gap between theory and practice and ensure tangible benefits to those who benefit from palliative care services.

Can you tell us about the research that has led to your winning this award and some of the main findings?

Early economic studies of hospital palliative care (from c.2005-2015) typically removed the most clinically complex cases on an assumption that there were some people for whom no difference could be made. My PhD work showed that this was scientifically flawed and missed the importance of intervention timing: the earlier the palliative care involvement in an episode of care, the more cost-effective the intervention, all else being equal. Furthermore, once we’d incorporated timing into the model we found that palliative care had a larger effect on treatment choices for that complex, high-cost group – precisely the opposite of what was previously assumed.

My post-doctoral work extended that exploration of how treatment effect estimates vary by how many serious medical conditions (‘comorbidities’) an individual has. The resultant meta-analysis, published in JAMA Internal Medicine in 2018, attracted a lot of attention in research and beyond. It shows that palliative care is more cost-effective for people with high numbers of comorbidities, and as we move into an age of multimorbidity, these dynamics are crucial to understand, as well as potentially making intervention more attractive to those who commission services. As a Principal Investigator I am currently working with Irish policymakers to quantify future need and model the costs and outcomes under different policy choices.

In the future I aim to focus increasingly on frontier questions for the field. I am a member of the EAPC Task Force on Big Data, with a particular interest in quasi-experimental methods. I am engaged in new collaborations with clinicians in Ireland and internationally to compare approaches to outcome measurement and address the ‘QALY problem’. I have begun working with an international team to address the established lack of economic evidence in low and middle-income countries.

Let’s talk about life outside of palliative care – when you are not in work, where could we find you?

As a parent of young children, I am unfamiliar with the concept of ‘free time’ as such. At weekends my natural habitat is refereeing a chaotic game of cricket/football/hurling in the road outside our house.

Thank you for speaking with us today and letting us know more about your important research, and congratulations on your award!

To hear more about Peter’s work and his views on the importance of an economic evidence base in palliative care, look out for his forthcoming EAPC blog.

Links and resources

Read Peter May et al, Economics of Palliative Care for Hospitalized Adults With Serious Illness: A Meta-analysis. JAMA Internal Medicine, 2018.

About the author

Dr Peter May is a Research Assistant Professor at Trinity College Dublin in Ireland. He is a health economist with a focus on palliative and end-of-life care. Twitter: @petermay_tcd


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‘The ideal world for palliative care is quite obvious’: an interview with #EAPC2022 award winner, Kim Beernaert.

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One of the many highlights of the European Association for Palliative Care (EAPC) Congress are the EAPC Researcher Awards. Awarded jointly by the EAPC and the EAPC Research Network, these awards recognise and support the work of scientists and clinicians in the field of palliative care who make an outstanding contribution to research and clinical practice. Today we are delighted to announce the joint winner of the EAPC Post-Doctoral Award – Dr Kim Beernaert. Kim is an assistant professor and senior researcher at the End-of-Life Care Research Group, Belgium.


Dr Kim Beernaert.

Thank you for being interviewed for the EAPC blog!  Can you tell me what, or who, was your inspiration for a career in palliative care?

After I finished my Master studies in Experimental and Theoretical Psychology (2009), I was a teacher at a high school in Flanders, Belgium. During this first job, I realised this was not really what I wanted to do, and I looked for a PhD opportunity. I was kind of picky and was only open for research with impact on people as well as high societal impact. When I saw the vacancy for a PhD position on palliative care in a bigger project aimed to improve end-of-life care at the End-of-Life Care Research Group in Belgium, I immediately got enthusiastic. This group is well known for its high-quality scientific research, but also for its high-impact dissemination expertise.

A kind of funny fact on the start of my career in palliative care research is that before I went to the job interview, I had to look up what the word palliative care actually meant. Since then, I have experienced during my time as a researcher that many people don’t really know what palliative care is, or what it can mean to them, especially those who have no one close in their family who received palliative care. Work to be done!

Can you tell us about the research that has led to your winning this award and some of the main findings?

I started my palliative care research in 2011 and I am now a senior researcher responsible for two programs in our End-of-Life Care Research Group. These research programs are about palliative care for people with cancer and paediatric palliative care. My research, both with adults and children, has led to many interesting findings and tools and it is hard for me to choose a few but here are some highlights:

  • We have developed, tested and are now implementing CAREFuL, an adapted version of the Liverpool Care Pathway to improve comfort around dying in elderly people.
  • We have developed and pilot tested a paediatric advance care planning tool to improve the communication on difficult topics such as end-of-life between adolescents with cancer, their parents and health carers. This tool is now being tested in an randomised control trial in four hospitals.
  • We have developed a programme to improve patient centredness of care for people with cancer, by giving them tools to start a conversation about palliative care with their physician.
  • We have developed quality indicators to measure quality of end-of-life care in children with serious illness. We found 21 indicators for children with cancer, 24 indicators for children with neurologic conditions and 23 for children with genetic/congenital conditions.
  • We are developing a perinatal palliative care program at gynaecology and neonatology wards, taking into account our findings from the project looking at experiences of end-of-life decision making for stillbirths, neonates and infants.

What does winning the EAPC Post-Doctoral Award mean to you?

It especially meant a lot to me that the EAPC Paediatric Task Force wanted to nominate me for this award. This task force has helped me in my development as a researcher. Every two months we meet to discuss the latest news in paediatric palliative care and to discuss the primary main actions that need to be undertaken on a practice, policy and research level.  The task force is full of very talented and influential people in the field of paediatric palliative care. Knowing they believe in me, and my work, was already very satisfying. But of course, winning the award made it even more beautiful. It means to me that my research has had impact, and this is something that was important to me right from the start of my academic career.

And finally, if you had a magic wand, what is your ‘ideal world’ for palliative care/what changes would you make to palliative care?

The ideal world for palliative care is quite obvious – it is to improve or maintain the quality of life of babies, children and adults with a serious illness and for people caring for them throughout the illness trajectory. I believe a family-centred approach is needed, in the very broad sense of family.

In my opinion, the philosophy and goals of palliative care first needs to be taught to all healthcare students who later will work with people with serious illness. This education today is still very limited and fragmented. Another important change that is needed is the recognition of the need for a palliative care approach earlier in the illness trajectory and for populations other than adult cancer patients. This means more capacity to deliver these services so more investment and staff, but also in the education of patients and their caregivers – more training and knowledge to address the “early palliative care needs” throughout the trajectory, starting from diagnosis. I also believe that both formal and informal (palliative) care in the home setting needs to be used more often and thus needs to be more supported. 

Thank you for speaking with us today and letting us know more about your important research, and congratulations on your award!

About the author

Kim Beernaert is an assistant professor and senior researcher at the End-of-Life Care Research Group at the Vrije Universiteit Brussel and Ghent University in Belgium. She is chair of the “Palliative care for people with cancer” Research Programme at the End-of-Life Care Research Group and is also responsible for the research in pediatric palliative care. She has a master’s degree in experimental and theoretical psychology and a PhD degree in Social Health Sciences (2015). Twitter: @KimBeernaert.


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Let’s make end-of-life communication in nursing homes easier!

Only 2 days to go to the eagerly awaited #EAPC2022 12th World Research Congress online!  There is still time to register to this accredited Congress to make sure you don’t miss out.

One of the many highlights of the Congress are the EAPC Researcher Awards. Awarded jointly by the EAPC and the EAPC Research Network (RN), these awards recognise and support the work of scientists and clinicians in the field of palliative care who make an outstanding contribution to research and clinical practice. Today we are delighted to announce the joint winner of the EAPC Early Researcher Award – Dr. Silvia Gonella. Here Silvia reflects on the barriers to undertaking research on end-of-life communication in nursing homes, and how to overcome them.


Photo of Silvia Gonella
Dr. Silvia Gonella.

I am honoured to receive this year’s EAPC Early Researcher Award and to share with you what I have learnt about research in end-of-life communication in nursing homes.

I began my interest in communication in nursing homes as a teenager when volunteering and seeing several residents who simply wanted someone available to listen to them. Then, while a nurse, I have experienced the importance of communication to establish sound relationships and provide individualised care. Communication is an essential means to deal with the vulnerabilities which people experience and they may benefit from communication which focuses on meaningful dialogue and a connection through relationships.1 People who spend their remaining life in a nursing home are usually highly vulnerable, with advanced frailty and may have dementia, with distressing symptoms.2 I soon realised that improving communication skills in this setting was essential and could have improved care outcomes for both residents and their families.

Ensure transparency of study aims and processes to boost recruitment and maintain non-judgemental attitudes.

The first challenge that researchers should be aware of when conducting research in nursing homes is difficulties in recruitment. Nursing homes may refuse participation for fear of laying bare problems and that their work will be negatively judged. Moreover, the cultural background of the home’s management team as well as the taboo of death, even among healthcare staff, may influence participation. Thus, it is likely that only people and facilities more sensitive to palliative care communication and those homes that question the quality of care provided will adhere to such research, which means a potentially positively biased picture. So to maximise recruitment it is vital to clearly communicate about the study aims, how research will be carried out, the fact that homes and individuals will not be identified etc.  It is also important to maintain non-judgemental attitudes, which involve acceptance, genuineness and empathy, and are reflected into one’s words and body language.

Researchers should be adequately trained and be offered emotional support by regularly debriefing with peers.

Research on end-of-life communication often relies onnarrative data collection methods including in-depth interviews. Researchers may experience emotional distress. They may feel guilty if they elicit family and caregivers’ suffering while interviewing if poor communication and scarce involvement in shared decision-making emerge. Moreover, boundaries of the researcher’s role may become blurred and researchers could be in trouble on the type and extent of support they should offer when interviewing a participant. It is therefore helpful to ensure that researchers have training in interviewing, but also about the ethical boundaries of their role and how to support interviewees’ potential distress. Faculties should introduce a specific curriculum to promote communication abilities with contributions of communication experts, psychologists and bioethicists. Then, each research team should acknowledge the range of their perspectives and skills and utilise them to promote a supportive environment. Research teams should make explicit their duty of care to team members by saving time for field work briefs and debriefs. Counselling may be occasionally required from outside the team.   

When exploring culturally-sensitive topics if possible researchers should share a common linguistic and cultural background with participants.

End-of-life communication is a highly culturally-sensitive issue and misunderstanding based on language and cultural difference can affect the experience of participants, the quality of data as well as their analysis. It’s not only a matter of linguistic background but also entails the understanding or sharing of cultural beliefs and values. Such kind of sharing promotes a sense of closeness, can make participants feel more comfortable and relaxed, and increases openness and chemistry with the researcher. If this sharing is not possible, having within the research team different disciplinary backgrounds, professional and personal experiences may help to achieve more rapport and in-depth understanding of participants’ experience.    There is still a long way to go to improve end-of-life communication in nursing homes. I hope to continue to contribute to this important topic and inform training of healthcare professionals who are involved in end-of-life communication to improve the quality of care offered to older persons, particularly those requiring nursing home care and their families.  

References

  1. Gastmans C. Dignity-enhancing nursing care: a foundational ethical framework. Nurs Ethics. 2013;20(2):142-9. doi: 10.1177/0969733012473772.
  2. Hendriks SA, Smalbrugge M, Galindo-Garre F, Hertogh CM, van der Steen JT. From admission to death: prevalence and course of pain, agitation, and shortness of breath, and treatment of these symptoms in nursing home residents with dementia. J Am Med Dir Assoc. 2015;16(6):475-81. doi: 10.1016/j.jamda.2014.12.016.

Links and resources

  • mySupport study explores the benefits of structured family care conferences and written information in supporting family caregivers of nursing home residents with advanced dementia who have to take decisions for their relative’s end-of-life care. Find out more here.

About the author

Silvia Gonella is a research nurse at City of Health and Science University Hospital of Turin (Italy) and has been collaborating with the Department of Sciences of Public Health and Paediatrics at the University of Turin (Italy) over the past 10 years. She has clinical and research experience in oncology, care of the older person and palliative care. She has experience in both quantitative and qualitative primary research methods as well as in literature reviews methodologies.


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Let the children speak! Part 2.

There are just 9 days to go to #EAPC2022! The 12th World Research Congress Online of the European Association for Palliative Care (EAPC) has live sessions on 18 to 20 May 2022, and lots of on-demand content.  Today, we are pleased to welcome Eve Namisango from the African Palliative Care Association to give us a sneak peek into her plenary lecture and to tell us more about why children and young people must be at the centre of palliative care research.  This is the second of two blogs from Eve and the theme for this blog is developmental age, how to engage with children and young people and cultural sensitivity.


Dr Eve Namisango.

In my last blog, I discussed informed consent and the engagement of healthcare workers.  Now I am turning my attention to three other key issues. First, the often-neglected topic of developmental age. This means the age that the child or young person is in their understanding and cognitive ability rather than their chronological age. Considering this shapes the nature of the research methods and the development of questionnaires and consent forms to ensure that these methods are appropriate for all children and young people who may wish to take part. More so, the age-banding to ensure that children who belong together in terms of developmental age may differ depending on culture and setting. Culture and setting are important because of the differences in the potential for social interaction.  Children and young people who have more opportunities for interaction may have better self-expression skills and abilities. For such reasons children in the United Kingdom (U.K.) can self-report from the age of five, yet in African countries like Uganda the age for self-reporting is about seven years.  This makes the process of conducting research in multiple countries more labour intensive, so one must plan carefully around this and ensure that it is given due consideration.

When it comes to choosing the most appropriate methods for data collection, one must choose from a rich basket of options holding the children and young people in mind. For example, observations work well with very young children and those who may not be able to speak. The use of talking mats has proven useful for children with speech disabilities and so it helps to work with experts in disability, play therapists and those in education to advise researchers on the best methods.  Based on my experience and that of associates in the U.K., Belgium and the Middle East, younger children (5 to 8 years) should have shorter interviews as compared to older children and young people, though this may vary depending on the cultural context, as mentioned earlier. For any engagement with children and young people the language used should be adapted to their individual needs but in general it should be simple and easy to understand. I find asking adolescents and teachers to peer review the materials for appropriateness of language to be very rewarding. 

Based on my field experiences in Africa, I have learnt some rules of engagement during the data collection. It is rewarding to start off with some folk songs or age-appropriate play as part of the rapport and trust building process. This engagement should continue throughout the data collection process (and some interludes during the interviews are recommended) and so the drum and folk songs in between the interviews are a great tool for keeping the children engaged in African settings.

It is also important to be mindful of culturally sensitive questions or phrases which may distress the children and young people.  For example, in the African culture most people may not want to talk about death, so one needs to avoid the use of sensitive terminologies like ‘end-of-life’ to avoid distress. I recall a young participant who became distressed because of this. At this point I realised the importance of having a study ‘distress protocol’ and I created one. This document stipulated what should be done incase a participant developed distress as a result of our interviews, and we had clinical psychologist and a child counsellor on site to provide the crisis counselling and support.

It is also important for quality assurance to train the researchers to boost their confidence and core competences in engaging with children and young people– and an individualised approach is essential. Some children may feel insecure sitting in interview rooms without their caregivers, so flexibility around who is in the room should be considered, as long as the child remains empowered to use their voice. A choice of interviewers also helps, as this gives the children the choice to go with what gives them comfort. A colleague from the Middle East also noted that the way we dress matters, so fancy dress may impress the children if you wish to add some flavour to the interview interaction experience. At the end of the interview, children should be appreciated with an age-appropriate gift if possible. This is some work and it takes effort and courage to carefully choose the right gift but let us appreciate the children for taking part!

One may ask how I hold the fort, ensure that the best practices are well adhered to but also continue to learn the best way to engage with children and young people? I learnt from colleagues in the UK that is useful to have an advisory board which should include children and adolescents to keep an eye on how things are going and what can be done better.

My thanks to the following people who shared useful experiences from their work: Marie Friedel, Lucy Coombes, Sema Yurduşen, Waleed Alrjoob, Debbie Braybrook, Stephen Marshall, Ghadeer Al-arja, Anna Roach, Sabah Boufkhed and Richard Harding.

photo credit: Kawempe Home Care.

Join Dr. Eve Namisango at #EAPC2022. On Friday 20th May 2022, Eve will give the Paediatric Palliative Care Plenary ‘Best Practices for Involving Children and Young People in Palliative Care Research’. Find out more about the Congress here.

Links and resources

About the author

Eve Namisango is Programmes, Research and Development Manager at the African Palliative Care Association. She holds masters and PhD degrees in palliative care from Cicely Saunders Institute, King’s College London. She also practices child life support, grief and bereavement support in communities. This blog is largely based on her research experience on interviewing children with HIV in Uganda and South Africa about their psychosocial needs and her PhD project research on outcome measurement in children with life limiting and life-threatening conditions which involved engaging children in research, using person-centred outcome measures and in result dissemination. Twitter: @EveNamisango; ORCID: 0000-0001-5032-4714.


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