Ranking of Palliative Care Development across Europe


HAGA CLIC AQUÍ PARA OBTENER LA VERSIÓN EN ESPAÑOL 

Carlos Centeno and Eduardo Garralda, members of the ATLANTES research programme of the Institute for Culture and Society (University of Navarra, Spain), presented the Ranking of Palliative Care Development at the 9th World Research Congress of the European Association for Palliative Care held in Dublin in June. It is the result of the collaborative work of Kathrin Woitha, José María Martín Moreno, David Clark and the ATLANTES team. Carlos and Eduardo explain.

Carlos Centeno

Carlos Centeno

Eduardo Garralda

Eduardo Garralda

Conscious of the increasing interest in monitoring palliative care development internationally, such as the quality of death index, we thought a ranking would be ideal for comparative purposes, putting countries´ performances in place, and motivating the development of palliative care.

As we had conducted a similar ranking in 2007 for the same European Union countries, we reckoned that a reproduction of the same method for updated data from 2013 could be of great interest, not only to reach a ranking classification but to observe changes over time.

For the purposes of this study, palliative care development is understood as a combination of the existence of services in a country (what they have called “resources”) and the capacity to develop further resources in the future (“vitality”). “Resources” comprise three types of indicators of palliative care services per population (inpatient palliative care units and inpatient hospices [IPCU], hospital support teams [HST] and home care teams [HCT]). “Vitality” indicators took into account the existence of a national association, a directory of services, physician accreditation, attendances at key European conferences and the volume of publications on palliative care development.

For the ranking construction itself, the leading country (by raw score) was then considered as the reference point against which all other countries were measured. Weightings were different and a score of 75% of the weight was given to resources while vitality was given a score of 25%. The total sum of points resulted in the final ranking.

What we found out was that the UK achieved the highest level of development (86% of the maximum possible score), followed by Belgium and The Netherlands (81%), and Sweden (80%). With regard to resources only, Luxembourg, the UK and Belgium were leading whereas in vitality, Germany and the UK got the best results. The Netherlands, Malta and Portugal showed the biggest improvements if compared with 2007, whereas the positions of Spain, France and Greece had deteriorated.

Rank imageThese results could be of particular interest to policymakers, as the ranking shows a country’s performance in palliative care in relation to neighbouring countries. Results also highlight good examples in palliative care development that could provide a benchmark for those needing improvement. And, indirectly, the dissemination of this ranking could tackle a major issue in palliative care development: public and professional awareness.

What was really great about the study was that the ranking method permitted a comparison between countries and that it indeed demonstrated changes if we look at the past. Still, either way, we know we have a big challenge ahead if we want to measure real provision of palliative care in a country, and that will require developing indicators capable of measuring palliative care provision by non-palliative care specialists.

Find out more . . .

  • This ranking was recently published in the Journal of Pain and Symptom Management and can be accessed here.

Read more posts from members of the ATLANTES research programme of the Institute for Culture and Society (University of Navarra, Spain) on the EAPC Blog.

 

 

Ranking del desarrollo de cuidados paliativos en la Unión Europea

Carlos Centeno y Eduardo Garralda, miembros del programa de investigación ATLANTES del Instituto Cultura y Sociedad (Universidad de Navarra, España), presentaron el Ranking del desarrollo de cuidados paliativos en Europa el pasado junio, en el noveno Congreso Internacional de Investigación de la Asociación Europea de Cuidados Paliativos celebrado en Dublín. Es el resultado de un trabajo colaborativo de Kathrin Woitha, José María Martín Moreno, David Clark y el equipo ATLANTES. Carlos y Eduardo nos lo explican.

 

Carlos Centeno

Carlos Centeno

Eduardo Garralda

Eduardo Garralda

Conscientes del creciente interés que suscita la monitorización del desarrollo de cuidados paliativos a nivel internacional, y en línea con otros estudios como el Índice de Calidad de Muerte, pensamos que un ranking sería conveniente para conocer y comparar la situación de los cuidados paliativos entre los distintos países, su desarrollo, y así, facilitar su promoción.

yaya que realizamos un ranking similar en 2007 para los mismos países de la Unión Europea, consideramos que una reproducción del mismo estudio pero con datos actualizados desde 2013, puede ser de gran interés; no sólo para obtener el ranking, sino también Para poder observar cambios a lo largo del tiempo.

Para los objetivos de este estudio, el desarrollo de cuidados paliativos se definió como la combinación de la existencia de servicios en un país (lo que han denominado “recursos”) y la capacidad de desarrollar recursos en el futuro (denominado “vitalidad”). Los “recursos” comprenden tres tipos de indicadores de los servicios de cuidados paliativos: por población (unidades de hospitalización(incluidos hospices), equipos de apoyo hospitalario y equipos domiciliarios). Los indicadores de “vitalidad” comprenden: la existencia de asociaciones nacionales, un directorio de servicios, acreditación de los médicos, asistencia a congresos europeos clave de cuidados paliativos, y el número de publicaciones sobre el desarrollo de cuidados paliativos.

Para la construcción del propio ranking, el país mejor puntuado (por puntuación bruta) fue considerado como la referencia contra la que medir el resto de países. Los pesos fueron distintos según los indicadores, así pues a los indicadores de recursos se les otorgó un peso del 75% y a los de vitalidad un 25%. La suma total de puntos proporcionó ranking final.

El ranking reveló es que el Reino Unido logró la puntuación más alta en lo que a desarrollo de cuidados paliativos se refiere (con un 86% sobre la máxima puntuación posible), seguido de Bélgica y Holanda (81%), y Suecia (80%). Si miramos sólo a los “recursos”, Luxemburgo, Reino Unido y Bélgica fueron los países mejor puntuados, mientras que en “vitalidad”, Alemania y Reino Unido obtuvieron los mejores resultados. Holanda, Malta y Portugal por su parte, mostraron las mejoras más notorias con respecto a 2007, mientras que las posiciones de países como España, Francia o Grecia empeoraron.

Rank imageEstos resultados pueden ser de especial interés para los políticos, ya que el ranking muestra la evolución de los cuidados paliativos de los países en relación con sus vecinos. Además los resultados resaltan buenos ejemplos en desarrollo de cuidados paliativos que pueden servir como referencia para aquellos con niveles más modestos. Asimismo, ila difusión del ranking podría contribuir, idealmente, al conocimiento y reconocimiento de los cuidados paliativos por parte de profesionales y el público en general.

Lo más valioso del estudio fue que el ranking nos permitió una comparación entre países y que de hecho, ha demostrado cambios en el tiempo. En cualquier caso, sabemos que tenemos retos en el horizonte si queremos medir la provisión real de cuidados paliativos que recibe un país, lo cual va ha precisar del desarrollo de indicadores capaces de medir la provisión de cuidados paliativos por parte de no especialistas.

Descubre más . . .

Conoce más sobre el Programa de investigación ATLANTES del Instituto Cultura y Sociedad (Universidad de Navarra, España) aquí 

 

Posted in EAPC World Research Congresses, RESEARCH | Tagged | Leave a comment

The time is nigh: When to hold an advance care planning conversation?

Continuing our occasional series of posts from members of the ACTION Consortium about their European study that aims to investigate how to help people with advanced cancer to have a conversation about preferences and wishes.

Sheila Payne, Emeritus Professor, International Observatory on End of Life Care, Lancaster University, UK, and a member of the ACTION Consortium, says it’s time to start talking.

Prof. Sheila Payne

Professor Sheila Payne

The purpose of this blog post is to open up debate about the timing of advance care planning (ACP) conversations. The one consistent message that I hear is that there is no perfect time to conduct an ACP conversation. Almost invariably, health professionals are concerned about ACP conversations being either too early or too late. So when is the ‘right time’? And when is it the right time for whom – health professional, patient or family member? In this context, ACP is defined as “a voluntary process of discussion about future care between an individual and their care providers, irrespective of discipline. […] It is recommended that with the individual’s agreement this discussion is documented, regularly reviewed, and communicated to key persons involved in their care.”

ACP is increasingly being recommended as a way to capture the preferences and wishes of patients about treatment and end-of-life care, in case they lose the capacity to express their views. It is predicated on the assumption that there is open disclosure of diagnosis and prognosis and that patients are able and willing to contemplate their own demise. However, these are difficult conversations to have for all parties involved, as we have discovered within a European Commission funded project called ACTION. The project involves an international cluster randomised clinical trial testing a modified version of the ‘Respecting Choices’ ACP conversation with patients who have either advanced lung or colorectal cancer (Rietjens et al 2016). Although we did not specifically investigate this, one of the emerging issues is about correct ‘timing’ of ACP conversations. Let us consider some of the arguments put forward:

‘Too early’ 

Commonly there are concerns about raising the topic of ACP when patients are at early stages of treatment because it might mean they have less ‘faith’ or confidence in the treatment options offered. Likewise, there are concerns when patients are feeling well either because they have not yet started treatment or because they have recovered from the immediate effects of surgery or chemotherapy. Health professionals have fears that discussing ACP will be seen as disheartening and discouraging, and therefore it should be left to later in the disease process. In many conditions, there is real prognostic uncertainty so health professionals may perceive that there is no urgency for undertaking ACP conversations.

‘Too late’ 

Equally, often there are concerns that offering ACP conversations comes too late because the patient is imminently dying and therefore there are few real choices to be made. Once again, these are concerns, driven by compassion, that inviting a very ill patient to contemplate end-of-life care, may increase their distress and those of their family members. Likewise, symptom burden such as breathlessness and fatigue may make it difficult for patients to concentrate on expressing their wishes.

‘Just right’

Therefore the window of opportunity appears to get smaller and smaller – in that brief moment between being ‘too early’ and ‘too late’. One way forward is to gradually raise the topic – explaining what ACP conversations are and what they are not. For example, it is important to dispel fears that the preferences cannot be changed, or that they are a strategy to save health service money. The timing of ACP conversations then becomes at the discretion of the patient, and for some, the time might never be right. While those patients, who in all probability are thinking about the impact and likely outcomes of the disease, may welcome an opportunity to talk through their preferences and wishes, even if they choose not to formalise them in an advance statement or directive.

Planning for the worst, while hoping for the best, may be the right way forward. What do you think?

Please share your comments below. With so many different cultural and legal factors involved in different countries in Europe and beyond, this could be the start of a great debate.

References
National End of Life Care Programme. Advance Care Planning: A Guide for Health and Social Care Staff, 2nd ed. Leicester. 2008.

Rietjens J.A, et al (2016) Advance care planning – a multicentre cluster randomised clinical trial: the research protocol of the ACTION study BMC Cancer 16:264 DOI 10.1186/s12885-016-2298-x.

Read more posts from the ACTION Consortium on the EAPC Blog.

Posted in ACTION, ADVANCE CAFRE PLANNING, EAPC COLLABORATIVE PROJECTS | Tagged , | 3 Comments

Candle Child Bereavement Service: Children, young people and loss

A new short series about bereaved children and teenagers with examples of initiatives from Greece, Romania and the UK . . .

Today, Judy Debenham introduces us to Rachel who has just been referred to the Candle Service, part of St Christopher’s Hospice in London, UK. The story is typical of  the kind of thinking  and work that go on before the Candle team meet the children. Around 200 children and young people aged three to 18, who are experiencing loss through death, are referred each year from five south London boroughs.

Judy Debenham

Judy Debenham

It’s a Thursday morning and I’m looking at a new referral sent by a primary school head teacher, about an eight-year-old girl called Rachel. Her grandmother, Tracey, died five months previously. Since then, the little girl has reportedly been ‘in trouble’ almost every week, her attendance and grades have dropped and she has been caught hoarding food taken from the canteen at lunchtime.

I wonder what the relationship with grandma was, whose mother it was who died. Is there a Dad around? How was Rachel prior to the death?

I start as we always do, by calling Mum, Janine. Over the course of the day and the following week, I leave three messages and end by writing to Mum to invite her to contact me. I don’t know if she wants to go ahead, it’s starting to look difficult Eventually, and with some help from the school, I manage to arrange an initial meeting with Mum who sounds very low and rather non-committal.

The appointment time comes and goes and I call Mum; what happened? She had to fetch Rachel from school as she was excluded. She sounds very fed up and speaks in monosyllables. We arrange another time and I share my feelings of frustration in supervision. Eventually, four weeks after I pick up the referral, I meet with Janine.

During a meeting that lasts over 90 minutes, I hear the story of a family who were organised around the care of Tracey (the grandmother). She lived with them and died from COPD (Chronic Obstructive Pulmonary Disease) and was also diabetic. Nevertheless, she adored her only granddaughter, Rachel, helped her with reading and was there every mealtime. Rachel loved riding on her grandmother’s mobility scooter, spending time at her caravan and loved her dog, Lucky. Where is Lucky now I wondered? Janine tells me he died three weeks ago; the week of our missed appointment and Rachel’s exclusion.

Janine is bereft without her mother: she can’t adjust to the empty house. Danny, Rachel’s Dad, ‘walked out’ just after Tracey’s death. Janine has now started antidepressants and admits sometimes she ‘can’t be bothered’ to cook or get up.

I listen, I empathise, and I think how Janine herself needs support in ‘growing up’ at 36. I describe to her how her daughter might be feeling; angry, resentful, wanting her Mum to be a Mum, anxious and worried, wondering why everyone she loves ‘disappears’ and who will be next. And also she is missing the kindly presence of Tracey, who held them all together and who loved her so much. I give the number of the local adult bereavement service to Janine and we make a time for me to meet Rachel.

Look out for the next instalment on the EAPC Blog when Judy will tell us more about her meeting with Rachel . . .

Read more posts in this series on the EAPC Blog . . .

 

 

Posted in BEREAVEMENT, Bereavement, PATIENT & FAMILY CARE | Tagged | Leave a comment

Patient-centred care: How far should patients be ‘active collaboration’ partners?

Marlieke van der Eerden, MSc and PhD candidate, is involved in the European FP7 research project ‘Best and promising practices in Integrated Palliative Care in Europe’ (InSup-C).

Marilee van der Eerden

Marlieke van der Eerden

The decisive role of patients

Having worked within integrated palliative care research for some years, I have learned that patient-centred care is one of the key aims of integrated palliative care. Patient-centred care definitions focus on organising care around patients’ needs and involving patients as the ‘active collaboration’ partners of professionals in designing their treatment trajectory. This implies that patients have a decisive role in making their treatment successful and bear responsibility for this. However, in interviews with incurably ill patients and family carers in the Netherlands, which I conducted for InSup-C, I found that respondents were not always happy with the decisive roles professionals attributed to them. This often caused uncertainty with the consequence that patient-centred care was not achieved. Three examples from the data will demonstrate this.

Experiences of patients and family carers

I remember Alma, who had incurable lung cancer and had reached the point of deciding whether or not to continue life-prolonging chemotherapy. It was an extremely difficult decision. She had had negative experiences with a previous, similar therapy, but still hoped for life prolongation. Her oncologist had given her a lot of information about the benefits and burdens of this therapy and said that for more information she could consult Google. However, she didn’t like Google and she felt uncertain not knowing what to decide. She felt that her oncologist had abandoned her and let her down. She would have liked him to help her more in making her decision.

I also remember Peter. He seldom saw his general practitioner (GP) and he always needed to initiate contact himself when he had a problem. But he did not like this and would try to put off seeking contact for as long as possible. However, Peter now felt unsure whether it might be too late when he finally did seek contact with his GP. He would have preferred the GP to contact him more often.

Thirdly I remember Charles – in my view perhaps the perfect example of an active collaboration partner. He coordinated his wife’s care, was always very alert and took his wife’s blood test results and templates with him to all consultations in order to ensure the right treatment decisions. He really liked his oncologist, because he had once said: “We do it together.” However, when his oncologist asked whether he remembered the date they had started chemotherapy for his wife that really took the biscuit! He started to doubt who was actually responsible for his wife’s treatment.

Final consideration

These examples triggered me to question the decisive roles attributed to patients in patient-centred care definitions. They also prompted me to ask what patients and family carers themselves think about what their role should be in designing their treatment trajectory. This has inspired me to examine our data on this topic more in depth to find an answer to these questions. The forthcoming results will hopefully shed more light on this important topic.

Note: Names have been changed to ensure the privacy of respondents.

To find out more . . .

Posted in EAPC COLLABORATIVE PROJECTS, InSup-C (integrated palliative care), PATIENT & FAMILY CARE | Tagged , | Leave a comment

Palliative care and neurology: Big steps forward

Professor David Oliver, University of Kent, UK, and EAPC board member, describes two major developments to enhance awareness of palliative care for neurological patients.

Prof. David Oliver

Prof. David Oliver

The publication of the consensus document on palliative care earlier this year 1 has led to two important developments, one of which is closer collaboration between the European Academy of Neurology (EAN) and the European Association for Palliative Care (EAPC).

In May 2016, a Spring School for Neurologists in Training across Europe, and more widely, was organised by the European Academy of Neurology (EAN). During the three-day seminar held at Staré Splavy, in the Czech Republic, a specific day on palliative care was held, with Professor Stefan Lorenzl, from Austria, and myself (from the UK) leading sessions on palliative care for neurology patients and communication in palliative and end of life care. More than 100 delegates attended, primarily from Eastern Europe and even North Africa. Delegates attended a morning lecture and an afternoon seminar, where cases were discussed in an interactive way. This was a very positive approach by the EAN and was well evaluated by both the delegates and the EAN.

At the end of May, the 2nd Congress of the EAN was held in Copenhagen. A case-based facilitated workshop on the palliative care of a person with amyotrophic lateral sclerosis (ALS, also known as motor neurone disease) involved speakers from across Europe. The inclusion of this session shows the EAN’s ongoing commitment to palliative care, with Professor Marianne de Visser, a neurologist from Amsterdam, and I, co-chairing the Scientific Panel on Palliative Care. The panel is looking at ongoing education for neurologists and palliative care professionals, as well as considering future educational and research collaborations.

Prof. Günther Deuschl, President of the EAN (right) and Prof. Philip Larkin, President of the EAPC, sign the Memorandum of Understanding between their respective associations.

Prof. Günther Deuschl, President of the EAN (right) and Prof. Philip Larkin, President of the EAPC, sign the Memorandum of Understanding between their respective associations.

EAN and EAPC sign Memorandum of Understanding

During the Copenhagen Congress, a Memorandum of Understanding was signed between the EAN and the EAPC by Professor Phil Larkin, President of the EAPC, and Professor Günther Deuschl, President of the EAN. The memorandum will encourage the collaboration between the two organisations, with opportunities for sessions at congresses, joint research and education, and ongoing working relationships. This will be continued by the formation of an EAPC Reference Group on neurology, allowing ongoing work and collaboration between the EAPC and EAN.

Speaking about the signing of the Memorandum, Professor Larkin said:

“This is an important development and shows the commitment of both groups to collaborate and move forward together, building on the EAPC Taskforce and the EAN Panel. We look forward to further collaboration and thank the EAN for this most positive move.”

Reference

  1. Oliver DJ, Borasio GD, Caraceni A, de Visser M, Grisold W, Lorenzl S, Veronese S, Voltz R. A consensus review on the development of palliative care for patients with chronic and progressive neurological disease. Eur J Neurol 2016; doi:10.1111/ene.12889.

In press: D J Oliver, GD Borasio, A Caraceni, M de Visser, W Grisold, S Lorenzl, S Veronese, R Voltz. Palliative care for progressive neurological diseases – a joint approach between the EAPC and the European Academy of Neurology. European Journal of Palliative Care vol. 23 (5) 2016.

 

 

Posted in EAPC COLLABORATIVE PROJECTS, EAPC Taskforces/special projects, NATIONAL & INTERNATIONAL REPORTS | Tagged | Leave a comment

Integrated palliative care: Reflections on sessions at the 9th EAPC World Research Congress in Dublin

Jeroen Hasselaar (Radboud University, Nijmegen, the Netherlands) and Agnes Csikos (University of Pécs Medical School, Hungary are members of the Integrated Palliative Care InSup-C Consortium Management Team. The project has been investigating the best way to deliver care to people who have advanced cancer, heart failure or lung disease as they come towards the end of their lives.

Agnes Csikos

Agnes Csikos

Jeroen Hasselaar

Jeroen Hasselaar

The integration of palliative care is an emerging topic, which was included in the programme of the 9th World Research Congress of the European Association for Palliative Care (EAPC) in Dublin via several sessions and abstracts. We highlight three examples here.

Stein Kaasa (Norway) approached the topic from the viewpoint of increased costs and complexity of treatments. These complexities increase transfers of patients and information exchange between professional caregivers. Integrated care pathways are mentioned as a possible solution for this. Such pathways need to include all possible steps that palliative patients undergo, from hospital diagnostics to community home care. For each different stage, care plans are needed, the evaluation of which can partly take place via patient-reported outcome measures (PROMs).

EAPC Conference, UCD, Dublin. June 2016.Tit Albreht (Slovenia) focused on the strategic transfer of hospital care towards community care because patients increasingly want to be cared for at home as much as possible. For palliative care delivery at home, availability of a professional team and patient trust in home care delivery are needed. Investment in education and training of multidisciplinary teams are therefore needed, together with the availability of social care.

Jeroen Hasselaar (the Netherlands) reported some preliminary results from the InSup-C international study on integrated palliative care. More than 150 patients and 90 family carers were included from palliative care initiatives in five European countries (the UK, the Netherlands, Germany, Belgium and Hungary). Patients and family carers particularly valued the personal/patient-centred approach deployed in palliative care compared to general healthcare, although the presence of several professional caregivers can also be challenging in terms of information exchange/sharing.

What different things are we talking about? 

Integration can be defined as the act or process of uniting different things. So, in palliative care, the first question is: What different things are we talking about? From the above-mentioned examples, it appears that due to increased complexity of treatment, palliative care becomes fragmented across several care settings, such as hospital care and home care. This demands more advanced ways of information exchange/sharing and the competencies of other professional caregivers.

What brings unity? 

The second question is: What brings unity? Pathways were mentioned as a structure that binds professionals together and gives clear clinical parameters to act upon, tailored to the setting where the patient is residing. This comes with a need for investments in multidisciplinary teams and competencies. Finally, however, it seems that the unifying element for patients and carers, which positively distinguishes palliative care, is the personal approach where patients are considered as ‘whole human beings’ instead of being identified merely by their disease.

The organisational integration of palliative care starts therefore with the acknowledgement that palliative patients are approached from an integrated perspective, namely as whole human beings.

To find out more . . .

  • Integrated Palliative Care: Are we ready for change? Symposium 30 September 2016, Museum of Natural Sciences, Brussels, Belgium. Find out more and register here.
  • Read more contributions from members of InSup-C on the EAPC Blog.

 

Posted in EAPC World Research Congresses, InSup-C (integrated palliative care) | Tagged , | Leave a comment

Merimna: Caring for children and families experiencing illness and death

Continuing our short series about bereaved children and teenagers with examples of initiatives from Greece, Romania and the UK . . .

Over 20 years Merimna has provided bereavement support to more than 50,000 children, parents, and school communities. Danai Papadatou, PhD, President of Merimna’s Board of Directors and Professor of Clinical Psychology, School of Health Sciences, Department of Nursing, National and Kapodistrian University of Athens, Greece, explains.

Prof. Danai Papagaiou

Prof. Danai Papadatou

Merimna (meaning ‘care’) is the only organisation in Greece that provides services to children who are affected by dying, death and bereavement, and to the significant adults in their lives. Founded in 1995 by experts in paediatric palliative care and bereavement support, this non-profit organisation has made a significant social contribution through the provision of these free of charge services:cc

 

  • Childhood and Family Bereavement Counselling Centres in Athens and experienced psychologists trained by Merimna assess each family’s needs and provide individual, family and/or group bereavement support for parentally bereaved children, and parents who grieve the loss of their spouse or the loss of their child. Traumatically bereaved children are offered long-term support, and families who live in remote places are supported by a Telephone Help Line.
  • Community interventions in loss, trauma or disasters – these are not limited to the crisis-phase immediately following the traumatic event (e.g. several student deaths at a school excursion) or disaster, but are integrated in the school programme for up to three years, so as to address the changing needs of traumatised children, families, schools and communities.
Drawing by a 10-year-old boy whose father committed suicide by hanging himself – at the time the boy’s mother had not informed him about this. The boy depicts a shipwreck with a drowning person shouting ‘help,’ and a rescuer responding ‘OK’. In the drawing, the boy most probably depicted himself asking for help from the psychologist. (Copyright: Merimna).

Drawing by a 10-year-old boy whose father committed suicide by hanging himself – at the time the boy’s mother had not informed him about this. The boy depicts a shipwreck with a drowning person shouting ‘help,’ and a rescuer responding ‘OK’. In the drawing, the boy most probably depicted himself asking for help from the psychologist. (Copyright: Merimna).

Greece has no official national record; however, it is estimated that, annually, more than 10,000 children and adolescents are bereaved. Over the past 20 years more than 50,000 children, parents and school communities have benefited from our services, while thousands of educators, health and mental health professionals have attended our training programs, seminars and national conferences.

Today, Merimna is faced with three major challenges:

Psychosocial effects of major economic hardship on childhood and family bereavement

Since the beginning of the crisis, we have been faced with more requests by families of traumatically bereaved children who encounter the death of a parent by suicide, homicide, heart attack, acute illness or road traffic accident, leaving the surviving parent overwhelmed with debts, unemployment, and limited support by significant others who are absorbed by their own difficulties. In addition to the loss of a parent, bereaved children experience the loss of the surviving parent who, although present, is psychologically absent and absorbed by the struggle to survive through economic hardship that compromises the family’s quality of life. A new programme for single parents seeks to enhance their resilience and parenting skills, with support being available whenever they decide to address their grief.

Support for traumatically bereaved refugee children and unaccompanied adolescents

We are challenged to revise our westernised theories on trauma, explore a much broader range of dimensions besides the symptomatology of PTSD (post-traumatic stress disorder), anxiety and depression, and include in our assessments and take into account the socio-political, cultural and historical context in which some of the children’s responses occur.

To raise public awareness of the challenges encountered by refugee children on the move, and to strongly advocate for their rights, we have launched at the Beneaki museum an exhibition of Akash’s photography, which is currently displayed in Switzerland and soon in other European countries. 

Major financial constraints due to the drastic decrease of donations

Merimna receives no funding from the government and relies entirely on donations from individuals, companies, foundations and the association ‘Friends of Merimna’ to operate its services. Staff salaries had to be reduced, services decreased, and the administration has focused on building collective resilience. We operate on the belief that the extent to which staff members are emotionally supported by their organisation affects their ability to provide quality to bereaved children families, and support their colleagues. Regular staff supervision, evaluation of services, and a fruitful communication between administration and staff enhance growth in the face of adversity.

More about Merimna – society for the care of children and families encountering illness and death
As well as the services described in this post, Merimna also offers paediatric palliative home care services to children and families living in the large area of Athens. Please visit our website

Read more posts in this series on the EAPC Blog . . .
Read last week’s post from Marinela Murg about ‘The Morning Star Camp’  run by Emanuel Hospice in Romania. Next week, Judy Debenham writes about the Candle Project at St Christopher’s Hospice in the UK.

 

Posted in BEREAVEMENT, Bereavement, PATIENT & FAMILY CARE | Tagged , , , , | Leave a comment