Author Archives: Sue

The Lancet publishes papers on core communication principles for communicating with children about illness and death

The global prevalence of life threatening conditions in children and parents makes it an urgent priority to develop child-focused communication guidelines for healthcare professionals to support families in their time of need.

On Thursday 14 March The Lancet published two groundbreaking papers collating evidence and global expertise to derive core communication principles to assist healthcare professionals in communicating with children about their own life threatening condition, or that of a parent.

These papers, led by a team at the University of Oxford, highlight the importance of communicating with families about life threatening conditions in ways that can make a real difference to the traumatic circumstances in which families find themselves.

Professor Alan Stein, senior author and Child and Adolescent Psychiatrist, University of Oxford, said, “This important Lancet series offers principles to guide conversations between health professionals, children and their parents about life threatening illness. There are huge time pressures on healthcare professionals and concerns about how to get it right for families.”

One of the most daunting challenges that parents and healthcare professionals face is to tell a child that they or their parent has as a life threatening diagnosis. Parents would do almost anything to shield their child from distress, yet sometimes this can’t be avoided. Evidence shows that talking with children about illness helps with family relationships and wellbeing.

Professor Stein continues, “Having guidelines makes it possible for healthcare professionals with different experience and training in both high, and low and middle income countries, to initiate these critical conversations to provide effective communication with parents and children.”

Sensitive communication

Sensitive communication and language tailored to the child’s age and understanding matters enormously to children and their families regardless of their life circumstances. Parents are understandably uncertain about how, when and what to tell their children about the condition and are fearful of the impact. Yet children are often aware that something is seriously wrong and want honest information. Clearly this will be different for a 6 year old or a 14 year old, so guidelines to enable these critical conversations and provide effective communication with parents and children is key.

The series highlights that:

  • The moment that the diagnosis is conveyed is often remembered vividly for many years and signals the beginning of a new trajectory for the family.
  • When a child has a life threatening condition there are practical reasons why the child should know, for example, if they need to take medicine or cooperate with treatment.
  • For the family, being able to talk openly about a life-threatening condition allows them to better support one another and find the help they need.
  •  When a parent has a life threatening condition children even at a young age notice changes at home and alterations in their parents’ behaviour.
  • Children want to know what is going on and in the absence of information they often ‘fill in the blanks’ by themselves to try and make sense of what they are seeing. This can sometimes be worse than reality, especially if the child believes they are responsible in some way.

These structured guidelines will enable healthcare professionals to successfully navigate this difficult and emotionally challenging task.

What do we tell the children? ICPCN participates in focus group workshop to develop communication guidelines for children

Participants in the focus group workshop held at the HSRC offices this March 2019 in Durban, South Africa

Many health care providers find the thought of talking to a child about their own or a parent’s life-limiting or life-threatening condition a daunting task.

Despite this, it is generally recognised that knowledge and understanding of their illness or that of a parent is important and leads to improved treatment adherence, mental health and the optimal functioning of the family.

Under the auspices of Oxford University and with the collaboration of the International Children’s Palliative Care Network (ICPCN) and Umduduzi – Hospice Care for Children a group of healthcare providers and relevant stakeholders met last week for a two-day workshop in Durban, South Africa.  The group were asked to give critical input into the development of guidelines for healthcare professionals to communicate with children in low and middle income countries about their own or a parents life-limiting or life-threatening condition.

Workshop participants included doctors, nurses, social workers, a teacher, a lay counselor and a translator. The workshop was led by researchers from Oxford University – Professor Alan Stein, Professor Sue Ziebland, Louise Dalton and Dr Elizabeth Rapa.

Challenges and barriers to communicating with children, particularly in their own work settings, and cultural factors that influence communication in a southern African context were discussed in detail.

Dr Yasmin Goga, a paediatric Clinical Haematologist at Nkosi Albert Luthuli Hospital said, “Being a good communicator in healthcare often feels like you are swimming upstream.”

Prof Alan Stein, Head of Section, Child and Adolescent Psychiatry at Oxford University explaining the reasons for the development of the guidelines, said, “Many clinicians are just not used to communicating meaningfully with children in their professional roles.”

A set of communication principles were reviewed and suggestions and innovations to facilitate implementation of the guidelines, once developed, were discussed at the meeting.

Some of the challenges identified by the group within the South African context included:

  • A perceived lack of time to spend on communicating with children
  • Cultural and religious beliefs that precluded discussions about death
  • Lack of suitable spaces for difficult conversations, e.g. a counselling room
  • Poorly chosen interpreters and translators who were unable or unwilling to convey the correct message to a child
  • Avoidance of difficult topics of conversation by both family members and health care providers
  • Difficulties encountered when talking to adolescents
  • A lack of training in this important skill
  • The stigma that still exists around certain illnesses, such as being HIV positive
  • The importance given to some illnesses over others, e.g. there is more emphasis and more resources given to children with cancer
  • Parents reluctant or unwilling to have distressing information disclosed to their children
  • Assumptions about what a child knows without actually checking with them

Once developed, the guidelines will be made available through multiple channels, including the ICPCN website.

5 Scholarships offered to clinicians from low and middle income countries for EPEC Training in October

EPEC-Pediatrics (Education in Palliative and End-of-life Care) is offering five competitive scholarships to clinicians from low to moderate income countries currently working in the field of pediatric palliative care.

The recipients of this scholarship will be selected based on leadership abilities, commitment to moving the field of palliative care forward, and attending to underserved pediatric populations.  The goal of this scholarship program is to identify medical professionals who are in a position to improve palliative care, including advanced pain and symptom management, for children both in their institution and beyond (region or country). The EPEC-Pediatrics training will take place in Minneapolis, Minnesota from 2 – 4 October and includes attendance at the Professional Development Workshop on 5 October.

Download detailed information on the training here.

This International Scholarship includes:

  • Economy airfare to and from Minneapolis, MN (USA)
  • Five nights hotel accommodations
  • Attendance at both the EPEC-Pediatrics and Professional Development Workshop (PDW) courses

Eligibility criteria:

  • Clinicians from lower to upper-middle income countries (using World Bank economic criteria), who work either exclusively or largely with pediatric palliative care patients
  • Applicants are currently involved in the management of children with serious illness
  • Preference will be given to individuals (e.g. faculty member, affiliated with a medical school, teaching hospital or large children’s hospital) who are interested in assuming or continuing a regional/national leadership role in the field of palliative care
  • Very good command of the English language (we prefer applicants who have undertaken a practicum, rotation, or training in an English-speaking country)
  • Commitment from leadership in pediatric pain and palliative care practice and education within the academic, hospital, or institutional setting

Required application materials:

  • Curriculum Vitae
  • Personal letter outlining the need for this scholarship, including:
    • Current and past pediatric experience
    • Current and past involvement in pediatric pain and palliative care
    • How this scholarship may improve the direct care for children in palliative care in their institution, region, and/or country
    • Commitment to complete all of the EPEC-Pediatric online modules before attending the 2 day EPEC-Pediatrics Face-to-Face conference
    • Description of your language skills
    • Career goals
  • A letter from the Dean, Department Chair, or similar institutional leader indicating a commitment to the applicant and his/her career goals, institutional support for the applicant’s activities in the field of pediatric palliative care.
  • Three letters of recommendation from clinical peer(s) who work with the applicant closely

Important Dates

  • March 1, 2019 – Application process opens
  • April 22, 2019 – All materials due (incomplete applications will not be considered)
  • April 30, 2019 – Final decisions made

To apply:

Email required application materials to email hidden; JavaScript is required


Head of Scholarship Review Committee:

Stefan J. Friedrichsdorf, MD, FAAP
Medical Director
Department of Pain Medicine, Palliative Care, & Integrative Medicine
Children’s Hospitals and Clinics of Minnesota

IAHPC offers traveling scholarships to palliative care conferences in Rwanda and Perth in 2019

The International Association for Hospice and Palliative Care (IAHPC) is pleased to announce it will provide Traveling Scholarships to support the travel of palliative care workers to attend the following educational events:

Applicants from all disciplines are welcome. In order to apply for a traveling scholarship, applicants must meet the following criteria:

  • Be current IAHPC members. If you wish to apply and are not an IAHPC member, you may join by clicking here.
  • Be current members at the time of the conference, workshop, congress or event.

Preference will be given to applicants who:

  • Have not received grants from IAHPC in the past 3 years.
  • Have been IAHPC active members for two or more consecutive years.
  • Whose institution is an IAHPC active member. To see institutional members click here.
  • Are living in Lower, Lower-Middle and Upper-Middle income categories as per the World Bank income classification data. To see click here.
  • Are dedicated full-time to palliative care in their current work.
  • Graduated less than 10 years ago from university.
  • Have an accepted abstract for poster / oral presentation. Proof of acceptance is required.
  • Describe in their applications long term goals which lead to improvements in any or all of the following areas: service provision; education; availability of and access to medicines; and public policy.

This program offers funding for travel and registration only, applicants will need to secure funding from other sources to cover additional expenses.

More detailed information about the application process and the online form are available at the IAHPC website.

Writing and submitting an abstract can be a challenge. Remember IAHPC members can conduct their research by accessing CINAHL database with unlimited on-line access / downloads of full text articles from leading journals,

If you need information on how to apply please contact Genevieve Napier, IAHPC Programs Officer at email hidden; JavaScript is required

ICPCN calls for palliative care to be standard in the treatment of children with cancer

Mum Kjersti Skanke with her sons Aksel and Eli. Aksel was diagnosed with cancer aged one and underwent treatment for 3 years. He is now cancer free.

Today is International Childhood Cancer Day

Today, Friday 15 February 2019, is International Childhood Cancer Day (ICCD). The focus of this year’s ICCD is on reducing cancer and treatment related pain.

Marked on calendars around the world, the day reminds us that cancer affects people of all ages and, without exception, dramatically changes the lives of all affected children, their families and loved ones.

The mother of a child with a cancer diagnosis once said, “The day you get told your child has cancer is the most unnatural day of any parent’s life. From that day forward, nothing is the same, your life and the life of your children is changed forever, because from that day forward you share your life with cancer.”

The International Children’s Palliative Care Network (ICPCN) believes that children and families faced with a cancer diagnosis should be provided with the very best care possible and should never have to walk this difficult journey alone. They should be provided with the support of people who fully comprehend the challenges they will face and are trained to do everything possible to ease the burden the disease bestows on the affected children and those that love them.

Critical gaps in the palliative care response

Aksel in hospital

Through ignorance and lack of training, there are still critical gaps in the palliative care response to children with cancer. Too many medical professionals hold on to the mythical belief that palliative care is only appropriate when all curative measures have failed, leading to patients and families missing out on the comprehensive, coordinated and compassionate care that a palliative team provides, irrespective of the outcome of the treatment.

Describing the difference it made to experience the care and support of Durban based Umduduzi Hospice Care for Children, Kjersti Skanke, mother to 4-year-old Aksel, diagnosed with Acute Myeloid Leukemia (AML) a week before his first birthday says, “The loss of my brother and the subsequent near death of my son were life-changing experiences that brought me insight and wisdom. Palliative care provided guidance, reassurance and comfort in a time of insecurity and confusion –  for my child and my family. It gave my son the emotional support and physical comfort he needed and allowed us to reach peace and acceptance with the outcome of his treatment.”

Enhanced quality of life

Dr Julia Ambler, Paediatric Palliative Care Doctor and Deputy Director of Umduduzi says, “We strongly recommend that a palliative care team be introduced to the child and the family at the earliest possible time after diagnosis. Doing this ensures that the child’s quality of life is enhanced through adequate pain and symptom management and they are provided with relevant support and therapies to help them come to terms with their illness and its possible outcome.”

Palliative care also addresses any social, psychological and spiritual issues the child and family members face at this difficult time.

Effective pain control and use of opioids

“Effective pain control is an area of expertise within paediatric palliative care,” says Dr Ambler. “Children with cancer should be provided with the best possible treatment to ensure that their pain and distressing symptoms are addressed.”

She goes on to say, “However, we still experience certain barriers to this, including the stigma around prescribing and using opiates for children. In addition, the lack of pain relief medications, such as morphine and opioids, in paediatric formulations needs to be addressed.”

Recognise the value of palliative care for children with cancer

On this International Children’s Cancer Day, ICPCN calls upon health authorities around the world to recognise the value of palliative care in the treatment of children with cancer and to make the provision of children’s palliative care a standard response to a child’s cancer diagnosis. The organisation also calls for a concerted effort to be made to overcome the stigma associated with the use of opioids in the treatment of pain in children.

Prof Julia Downing, Chief Executive of the ICPCN says, “We ask that children’s palliative care be integrated into all public health systems, that specific policies be developed, that funds are allocated and relevant training is provided. We believe that this will ensure that a child with a cancer diagnosis is given the best chance to experience a better quality of life throughout the duration of their illness, and, should treatment fail to cure the disease, that the child and family will be provided with compassionate and qualified support at the end of life and during the period of bereavement.”

Call for small grant applications for palliative care development in Africa

The Trustees of the True Colours Trust have set aside funds towards a small grants programme for hospices and palliative care providers across Africa to support the development of palliative care.

All work supported by this programme must adhere to the WHO definition of palliative care

All funding decisions are made by the Trustees of the True Colours Trust, who meet twice a year to review applications. Applications and approved grants are administered by the African Palliative Care Association. Funding is primarily for one-off projects, with a duration of no more than one year.  The size of grants ranges from £500- £5 000.

Funding Priorities

Trustees favour support for items which directly improve the patient experience and the standard of palliative care services for people of all ages. Priority is given to the following, in no particular order:

  • Training courses for palliative care service providers held in Africa (applicants must supply a curriculum / outline of the topics to be covered, Curriculum vitae (CVs) of the trainers, fill out the training template and supply the name of the accrediting body. Funds will be released on receiving the letter of acceptance for the training institution for those applying to undertake courses)
  • Equipment for patients (e.g. beds, wheelchairs). For equipment we will require at least three quotes attached to the application, with the preferred quote indicated and reasons why.
  • Projects supporting paediatric palliative care services (this could include purchasing toys, integrating paediatric services into an existing programme, developing materials for advocacy, etc.).
  • Palliative care Essential Medicines.
  • Capital improvement costs (such as refurbishing buildings to improve the patient experience, buying furniture, etc.)
  • Developing small palliative care projects integrating palliative care components into existing health care services, adapting palliative care models, quality improvement activities such as Palliative Care standards, developing materials among others. and helping health care providers to establish new palliative care projects where none currently exist.
  • Increasing access to palliative care services in rural areas.

The deadline for applications this year will be 05th March and 01st September respectively.

You can find out more and apply via the APCA website.