‘This is your golden time. You enjoy it and you’ve plenty time for crying after’: How dysphagia impacts family caregivers of people with amyotrophic lateral sclerosis

CATCH UP WITH SOME OF OUR ‘PAST POSTS’ – summer holidays are always a great time to catch up on articles you may have missed. Today, we’re republishing a post by Dominika Lisiecka, PhD, Lecturer, Department of Nursing and Healthcare Sciences, Institute of Technology Tralee, Ireland, whose research article was our ‘Editor’s Choice’ from ‘Palliative Medicine’ in September 2020.

Each month, Professor Catherine Walshe, Editor-in-Chief of ‘Palliative Medicine’, chooses an article that readers may find particularly interesting or useful and invites the authors to draw out the key points on the EAPC blog. Focusing on research that is novel, a robust review, from a specific country or just slightly left of field, the ‘Editor’s Choice’ post aims to share experience and stimulate ideas. We hope you’ll read the longer article in ‘Palliative Medicine’, or EAPC members can access a free copy from the EAPC website.


Dominika Lisiecka.

My journey with Amyotrophic Lateral Sclerosis (ALS) started approximately 15 years ago when I was working in an acute hospital in Ireland. As a newly qualified speech and language therapist I was often overwhelmed with the complexity of the management of this disease. In line with my professional background, I was focusing on both communication and swallowing impairments (dysphagia), but the medical safety that can be impacted by dysphagia was a clear priority for me at that time.

Later on, people living with ALS taught me how to respect their quality of life and balance risks related to dysphagia. I often thought about the caregivers, always present in my office but situated in the background. I had limited clinical resources and no time to investigate their journey, my focus was supporting the person with ALS. My interest in the caregivers of people with ALS continued to grow over the years and I knew that my PhD research would include this population.

In 2015, my research project investigating the experiences of dysphagia for both people with ALS and their caregivers was awarded a research fellowship from the Health Research Board in Ireland. I was fortunate to work with Dr Helen Kelly and Prof Jeanne Jackson (both from University College Cork) as my supervisors. Part of our research culminated in the article recently published in ‘Palliative Medicine’: ‘This is your golden time. You enjoy it and you’ve plenty time for crying after’: How dysphagia impacts family caregivers of people with amyotrophic lateral sclerosis – a qualitative study. This article presents data collected through multiple interviews and observations of family caregivers of people living with ALS and dysphagia. Data analysis revealed that ALS significantly transformed the lives of the caregivers. They were unsure how the disease was going to progress and had to balance their caregiving duties with other obligations and family responsibilities. They were often exhausted, lonely, and frustrated. Despite their best efforts it was not possible to stop the deterioration of their loved one or to cure ALS.

How did the presence of progressive dysphagia influence their lives? The caregivers were very aware of the risks associated with dysphagia and attempted to constantly support the person with ALS during meals. They were afraid of the probability of their loved one choking and were unsure how to mange any choking episodes at home. Their own relationship with food was affected; food was no longer a source of pleasure but something dangerous.

Kay: Because she [her mother] could be sitting on there and she’d be coughing and next minute you’d have to tap her on the back and I’d be going Jesus is it stuck? (…) You were uneasy all the time when she was eating because do you know you’d be kind of watching was it going down or was it staying and getting stuck. (lines 248-253)

What is the relevance of our paper for healthcare professionals? It describes how dysphagia affects caregivers of people with ALS and how it disrupts their lives. The caregivers’ ability to cope with dysphagia depends on many factors. As caregivers are often the key people supporting the person with ALS and carrying out professionals’ recommendations, their work should be recognised.

Healthcare professionals should not only focus on the person with ALS when managing dysphagia, but also consider and include the needs of the caregivers.

Links

DOWNLOAD A COPY OF THE FULL ARTICLE IN PALLIATIVE MEDICINE

This post relates to the longer article, ‘This is your golden time. You enjoy it and you’ve plenty time for crying after’: How dysphagia impacts family caregivers of people with amyotrophic lateral sclerosis – A qualitative study, by D Lisiecka, H Kelly, J Jackson; published in Palliative Medicine  2020, Vol. 34 (8), pages:1097-1107. Article first published online June 17, 2020. Issue published September 2020.  https://doi.org/10.1177/0269216320932754


EAPC MEMBERS – DOWNLOAD THIS, AND ALL OTHER ‘EDITOR’S CHOICE’ ARTICLES, FREE OF CHARGE

If you are currently an Individual or Associate EAPC Member you have full access to the Members Only Area of the EAPC website, and the chance to download a free PDF of all ‘Editor’s choice’ articles and many other papers too.  Just click here, enter your email address and membership password and choose from the list of journal articles.

How to join as an Individual/Associate Member, or to renew your membership

  • Individual members are invited to join the EAPC or renew their membership here.
  • Associate Members – all current members of our National Associations are invited to join the EAPC or renew their membership for FREE. Click here.

 

 

 

Posted in Carers, EAPC-LINKED JOURNALS, Neurology, Palliative Medicine: Editor's Choice, PATIENT & FAMILY CARE | Tagged , | 1 Comment

EAPC 17th World Congress Online: Best European Paper of 2020

NEW SERIES: EXPLORING NEW DIMENSIONS AT #EAPC2021 …

THERE ARE JUST 64 DAYS TO THE EAPC 17TH WORLD CONGRESS ONLINE WITH LIVE SESSIONS ON 6 TO 8 OCTOBER, AND LOTS OF ON-DEMAND CONTENT AVAILABLE BEFORE AND AFTER THE CONGRESS.

A high point of every EAPC World Congress is the award to the authors of the best papers published in our two official journals. Here, Charles F von Gunten and Lisa Pelzek-Braun tell us more about ‘Journal of Palliative Medicine’ and encourage you to join Dr von Gunten at the award presentation on Friday 8 October 2021.


Lisa Pelzek-Braun (Managing Editor) and Charles F von Gunten (Editor-in-Chief) Journal of Palliative Medicine.

At the 2021 World Congress of the European Association for Palliative Care (EAPC), Journal of Palliative Medicine (JPM) will announce the best European paper published in calendar year 2020 accompanied by a prize of 1,000 euros toward attendance.

The number of papers submitted from European authors has increased substantially since the EAPC made JPM one of its official scientific journals. Forty-nine papers were published, either in print or on-line by December 31, 2020, and are eligible for the prize. The acceptance rate for research reports has dropped to 33 per cent in response to the growing number of submissions – very competitive indeed. You will want to be present when the winner is announced on 8 October 2021.

Journal of Palliative Medicine is a global journal with editorial board membership and manuscripts from around the world. We are not just an American journal. The Time-to-First Decision averages only 19 days and represents our commitment to provide authors with prompt decisions and not have their manuscripts languish in decision queues.

The journal enjoys exceptional global visibility, with over 463,559 full-text downloads (28 per cent year-on-year increase) in 2020 and 685,916 abstract-only downloads (11 per cent year-on-year increase). In the first six months of 2021, downloads increased an additional 13 per cent. Outside the United States, Canada, the United Kingdom, Australia, China, Germany, India, Japan, Brazil, and Singapore are the countries in descending order that most use the journal.

Journal of Palliative Medicine had a terrific year of growth, with an increase in the impact factor of 32 per cent, now 2.947. The impact factor reflects the citations in 2020 to papers published in 2018 and 2019. Additionally, The Scopus 2020 CiteScore has not changed, remaining at 3.2. CiteScore tallies the number of citations from 2020 to articles published 2017-2019 divided by the number of articles published 2017-2019.

Journal of Palliative Medicine looks and feels different from other scientific journals serving the field because ‘Journal of Palliative Medicine’ has the clinician in mind. In contrast with scientific journals for whom the target is academic researchers, when reviewing submissions, we ask:

“What will help the clinician who is frequently working in our field to understand what is ‘new’ and what can influence practice?”

Palliative Medicine Reports is a new journal launched in 2020 as a response to the growing global requirement that research be published open access if supported with public funds. We have had over 100 submissions and published more than 40 papers at the time of writing. The response has been gratifying. In future years, we will include European papers published with ‘Palliative Medicine Reports’ with those eligible for the annual prize.

Journal of Palliative Medicine is structured to correspond with the way new information develops. Letters (500 words) describe interesting observations from clinicians that puzzle them or seem to merit further study. A distinct case discussion series works to ‘unpack’ interesting cases for purposes of teaching or enabling further study. Brief Reports (1,500 words) represent the next step – the publication and dissemination of initial studies (e.g., Phase II clinical trials or work to establish feasibility or confirm observations in individual cases that might have appeared as a letter). Research reports (3,000 words) represent complete studies that seek to answer an important clinical question.

The most-read section is the Personal Reflections section. Individuals describe sometimes very personal experiences that illustrate the experience of working in our field. The reader response of, “that is how I feel”, “this describes what happens to me all the time”, and “I’m so proud to be in a field that has people like this” are some of the reactions we hear. In addition, an In this Issue section gives generally one-two sentence summaries for the busy clinician who wants to know ‘just the facts’ in a bite-sized fashion.

I look forward to joining you at the congress on Friday 8 October. (The exact time will be announced shortly when the congress programme goes online).

Links

EXPLORE NEW DIMENSIONS at #EAPC2021
Join Dr Charles von Gunten on Friday 8 October 2021 at the EAPC 17th World Congress Online when he presents the winner of the Best European Paper of 2020.

  • Register for the congress here. (Up to 25% discount for EAPC members)
  • Enter the Science Slam here.

Follow the special series ‘Exploring New Dimensions at #EAPC2021’ on the EAPC blog.

 

Posted in 17th EAPC World Congress, EAPC World Congresses, EAPC-LINKED JOURNALS, Journal of Palliative Medicine | Tagged | Leave a comment

Caregiving at the margins in palliative care

CATCH UP WITH SOME OF OUR ‘PAST POSTS’ – summer holidays are always a great time to catch up on articles you may have missed. Today, we’re republishing a post by Ashley Mollison, a PhD student, and Kelli Stajduhar, a professor of nursing, both from University of Victoria, Canada, whose research article was our ‘Editor’s Choice’ from ‘Palliative Medicine’ in  July 2020. And there’s a free copy of the full article to download too …

Each month, Professor Catherine Walshe, Editor-in-Chief of Palliative Medicine, chooses an article that readers may find particularly interesting or useful and invites the authors to draw out the key points on the EAPC blog. Focusing on research that is novel, a robust review, from a specific country or just slightly left of field, the ‘Editor’s Choice’ post aims to share experience and stimulate ideas. We hope you’ll read the longer Open Access  article in ‘Palliative Medicine’. 


Ashley Mollison (left) and Kelli Stajduhar. Photo: UVic Photo Services.

Healthcare systems in the global north rely heavily on the informal work of family caregivers. While research on family caregiving in palliative care exists, most has occurred with caregivers who are housed, middle class, white, and who have networks of social support to draw on. In our recent Palliative Medicine article, we report on the experiences of a less visible group of ‘family’ caregivers – those who provide care and support for people positioned as structurally vulnerable – those living in poverty, vulnerably housed, racialised, and experiencing discrimination because of mental health and substance use issues.

Like much of the research on family caregiving, our findings suggest there are deleterious effects on physical and emotional wellbeing. Our study also reveals that while ‘family’ caregivers play pivotal roles in providing end-of-life care for structurally vulnerable populations, ‘who’ these family caregivers are, and their experiences differ from much of what has previously been published. In our study, family caregivers were themselves experiencing structural vulnerabilities – and sometimes even on a palliative trajectory – resulting in significant inequities and challenges in access to support and ability to provide care.

Poverty and unstable housing was an overarching factor shaping caregiving experiences, contributing significant stress to the already high demands of caregiving at end of life. While some were making the decision between paying rent and buying food, others were squeaking by on low income from precarious employment, ineligible for ‘paid’ leave.

Caregivers faced barriers related to poverty, homelessness and substance use related stigma. Not all caregivers used substances, but those who did found themselves using more to cope with the toll of caregiving. Others faced discrimination trying to access needed pain medications for their loved ones – the assumption being that drugs would be diverted for the caregivers’ use. Due to stigma and discrimination, their capacity to fulfil a caregiving role was significantly hampered, restricting opportunities to give care or facilitate an individual’s request to be cared for and die ‘at home’.

Dying at home was not a possibility for many of our participants. There was often a lack of safe, secure and stable housing where care could be provided. The places where people lived (e.g., shelters, transitional and supportive housing) were often deemed ‘unsafe’ for home care services to assist and support caregivers in their role. Declining physical health and greater care needs actually increased care recipients’ risk of being evicted and losing their sheltered, transitional, or supportive housing. Restrictive guest and co-habitation policies prevented caregivers from living with, staying over, or spending time with their loved ones.

Complex relational tensions were also found to exist. Caregivers commonly shared how they were forced to delicately navigate issues of power, trust and control, particularly over decision-making within the caregiver/recipient relationship. It was challenging for caregivers to access and advocate for quality care when they and their loved ones were often assumed to be incapable of making ‘good’ and ‘healthy’ decisions. Street family and friends, despite their close relationship with care recipients, shared how they were often left out of conversations and critical decisions because they were not deemed ‘family’ by legal and healthcare systems.

Overall, we found that one-size-fits-all caregiver supports that currently exist in Canada (e.g., palliative home care and employment insurance programmes) hold little relevance for structurally vulnerable populations. Engaging with family caregivers in these contexts emerged as missing and necessary.

Equity in Palliative Approaches to Care (ePAC)

At the University of Victoria, we are mobilising these findings through our ePAC Collaborative. Members of the collaborative work together to conduct research with local, national and international partners, and develop resources and tools, programmes, and services aimed at improving access to quality care for people positioned as structurally vulnerable. Our projects are building capacity among people who live and work in the inner city to adapt palliative care knowledge, while working with the mainstream healthcare system to create approaches and systems that are more flexible and safe, to conceptualise family caregiving in all its forms.


More about the authors…

Ashley Mollison, MA, is a PhD student in the Social Dimensions of Health program at UVic (University of Victoria) and the Equity in Palliative Approaches to Care (ePAC) project coordinator. In 2020, Ashley was awarded the prestigious Vanier Canada Graduate Scholarship. Dr Kelli Stajduhar, RN, PhD, FCAHS, is a professor at the UVic School of Nursing and Institute on Aging & Lifelong Health, and leads the ePAC collaborative. For more information and to join our newsletter, please visit: https://www.equityinpalliativecare.com/

DOWNLOAD A COPY OF THE FULL ARTICLE IN PALLIATIVE MEDICINE (OPEN ACCESS)
This post relates to the longer article,‘Caregiving at the margins: An ethnographic exploration of family caregivers’ experiences providing care for structurally vulnerable populations at the end of life’ by Kelli I Stajduhar, Melissa Giesbrecht, Ashley Mollison, Naheed Dosaniand Ryan McNeil, published in Palliative Medicine 2020, 34 (7); pages: 946–953. Article first published online April 27, 2020. Issue published: 1 July 2020. https://journals.sagepub.com/doi/10.1177/0269216320917875

EAPC MEMBERS – DOWNLOAD THIS, AND ALL OTHER ‘EDITOR’S CHOICE’ ARTICLES, FREE OF CHARGE

If you are currently an Individual or Associate EAPC Member you have full access to the Members Only Area of the EAPC website, and the chance to download a free PDF of all ‘Editor’s choice’ articles and many other papers too.  Just click here, enter your email address and membership password and choose from the list of journal articles.

How to join as an Individual/Associate Member, or to renew your membership

  • Individual members are invited to join the EAPC or renew their membership here.
  • Associate Members – all current members of our National Associations are invited to join the EAPC or renew their membership for FREE. Click here.
Posted in EAPC-LINKED JOURNALS, Minority Communities, Palliative Medicine: Editor's Choice, PATIENT & FAMILY CARE, RESEARCH | Tagged , , | Leave a comment

Interventions at the end of life in children: Where evidence meets experience

NEW SERIES: EXPLORING NEW DIMENSIONS AT #EAPC2021 …

There are just 73 days to the 17th World Congress Online of the European Association for Palliative Care (EAPC). With live sessions on 6 to 8 October, and lots of on-demand content before and after the congress.

Ahead of the congress, we’re delighted to give some highlights of what to expect at #EAPC2021. Today, Richard Hain, Consultant and Clinical Lead of the Paediatric Palliative Care Network in Wales, and Honorary Professor in Clinical Ethics, Swansea University, Wales, UK, gives a glimpse of the plenary lecture he will give on Friday 8 October.


Dr Richard Hain.

Some years ago, I had the great good fortune to spend a sabbatical studying ethics at a university in England. Participants in the course came from diverse backgrounds that included a BBC radio presenter, lawyer and professor of philosophy, but I was the only medic.

One seminar topic was the principle of ‘double effect’. Double effect describes the situation in which you act with the intention that something good will happen, but you know as you act that something bad is also possible or even inevitable. As you can imagine with such a contentious subject, the discussion was spirited and lively. Just how bad does an unintended consequence have to be before it outweighs an intended good one? How can you know whether an intention is good? Does intention matter at all?

It was, in short, just the sort of lively academic discussion that you hope for when you are doing a sabbatical in a department of ethics. My enjoyment of it, however, was interrupted when my mobile phone went off. It was a paediatric oncology consultant colleague asking my advice about a patient. He was a little boy with a large mediastinal tumour that was expanding rapidly despite all appropriate treatment. and was expected to cause death by acute respiratory obstruction in the next few days or weeks. That afternoon, however, he had developed some signs of septicaemia. Death from respiratory obstruction is likely to be much more frightening than death from septicaemia. Was it right, my colleague wondered, to treat this little boy with antibiotics, knowing that we would be rescuing him from a potentially peaceful death only to condemn him a short while later to a much more frightening one?

We discussed the issues and came to a conclusion about what we felt was the best way forward. As I hung up, I reflected that we had been relying on the very principle my ethics group had been debating in the abstract all afternoon. Further, I realised that was not unusual; ethical issues that are the subject of abstract philosophical debate to ethicists are often a matter of everyday clinical practice to clinicians. We are constantly engaging, for example, with issues of benefit and harm, of autonomy and authority, not as academic concepts but as real-world practical issues that impact on the wellbeing of our patients and their families.

I do not at all mean to minimise the value of academic ethics as a discipline. On the contrary, it seems to me important that clinical practice should always be informed by principles that have been well considered and rehearsed in the abstract. But the great privilege of being an ethicist, who is also a practising clinician, is that we see those principles working themselves out in the lives of real people.

Palliative care is principled, because it turns to theories and ideas, but it is also pragmatic because at its heart is a vulnerable child and a family going through the worst experience of their life. Symptom management at the end of life is a perfect example of where evidence must meet experience.


Join Richard Hain for his plenary lecture, Interventions at the end of life in children: Where evidence meets experience, at 10am on Friday, 8 October 2021. Richard, together with other leading practitioners, will be part of the Paediatric Palliative Care Day at the EAPC 17th World Congress Online. His lecture will be recorded and released for on-demand viewing by registered delegates until January 2022.

Posted in 17th EAPC World Congress, CHILDREN'S PALLIATIVE CARE, EAPC World Congresses | Tagged , , | 1 Comment

Working with the WHO to improve palliative care in Europe

Dr Julie Ling, CEO of the European Association for Palliative Care (EAPC), looks forward to strengthening links with the World Health Organization (WHO) in her new consultancy role with the WHO.


Dr Julie Ling.

Working as the CEO of the EAPC has given me the amazing opportunity to see how palliative care is provided across our region. No country is the same and although there are similarities, the provision of palliative care in countries throughout Europe is unique and dependent on the health service, the culture and many other variables.

I was truly delighted to hear that the World Health Organization (WHO) Regional Office for Europe (WHO EURO), based in Copenhagen, Denmark had recently initiated a new programme to strengthen palliative care in Europe. This is a first! The first time that the WHO regional office has had a specific focus on palliative care. Palliative care is situated in a new division on Country Health Policy and Systems under a new unit on Health Workforce and Service Delivery. One of the functions of the new unit is to provide technical support and guidance to WHO member states on palliative care.

Originally a palliative care nurse, with many years’ experience of working in a range of roles in palliative care, I am honoured to be appointed to work on a consultancy basis with this new department as a Consultant on Palliative Care. It is an amazing opportunity to work with WHO colleagues (both in Copenhagen and Geneva), the palliative care community, and officials from WHO member countries to assist in the development of palliative care. The role involves providing technical assistance to countries to strengthen palliative care services across all disease and age groups. This new role also supports activities that seek to expand the integration of palliative care services into the national health planning, including in those targeting other health areas such as ageing, noncommunicable diseases, child health, medicines, emergencies, and primary health care.

I am happy to reassure you all, that my new role is in addition to my very important work with the EAPC. Indeed, strengthening the links between the EAPC and WHO is an EAPC strategic goal. There is a synergy between these two separate but complementary roles that will ultimately be a strength for both the EAPC and WHO Europe. Looks like I am going to be very busy…

Links


EXPLORE NEW DIMENSIONS at #EAPC2021. The EAPC 17th World Congress Online offers interactive online sessions from 6 to 8 October 2021, including an entire day dedicated to Paediatric Palliative Care. And you will be able to enjoy lots of on-demand content before and after the congress dates. Get some sneak peeks of congress events on the EAPC blog.

  • Register for the congress here. (Up to 25% discount for EAPC members).
  • Enter the International Photo Competition here.  
  • Enter the Science Slam here.

 

 

 

 

 

 

 

 

 

 

 

 

Posted in ADVOCACY & POLICY, EAPC ACTIVITIES | Tagged , , | Leave a comment