Author Archives: Sue

Mother’s Day Mourning – a blog on supporting grieving moms on Mother’s Day

Lanise Shortell serves her local community as a perinatal and paediatric hospice nurse in Atlanta, Georgia. She facilitates family centered grief groups and speaks internationally to spiritual leaders on the importance of family grief support to enhance communities around the world. In her latest blog post written for ICPCN, Lanise looks at the ‘bone deep’ grief experienced by mothers who have buried a child and ways in which we can support them without resorting to clichéd responses.

She writes, “Our attempts in caring for this unique population leave grieving mothers feeling misunderstood and distressingly isolated.”

And then goes on to say, “We learn to comfort grieving moms best from grieving moms. Grieving mothers are our experts. As  Mother’s Day approaches, consider yielding to and implementing the guidance below. The smallest gestures have the most impact in supporting a community of women that is often unseen.”

A mother who lost her six-year-old son to a rare brain tumour tells us to avoid asking bereaved mothers how they are doing. She says, “Rest assured, grieving moms will not be doing well on Mother’s Day. Send a text, a card, or make a phone call to acknowledge the heaviness of the day. Encouraging words help us feel less hidden.”

Lanise writes that child loss is a ‘journey without guideposts but says that our communities can be safe havens for grieving moms by developing listening skills, empathy, and an inclusive mindset. She encourages the readers to consider a mom that is shouldering grief this season and extend a hand of compassion.

Read the full blog here

Paediatric Palliative Care in resource-poor countries

Children, an international open access journal of paediatrics published monthly online by MDPI has recently published a paper focusing on the great need for paediatric palliative care in resource poor countries. The paper was written by Julia Downing, Sue Boucher, Busi Nkosi and Alex Daniels.

The authors write that “there is a great need for paediatric palliative care (PPC) services globally, but access to services is lacking in many parts of the world, particularly in resource-poor settings. Globally it is estimated that 21.6 million children need access to palliative care, with 8.2 needing specialist services.”

The paper looks at the challenges that have been identified to the development of palliative care for children globally including acess to treatment, access to medications, lack of trained health and social care professionals and a lack of awareness and policies to support its development.

Suggested strategies to overcome these challenges include using advocacy and raising public awareness, provision of education, improved access to medications and promotion of the implementation of services and research.

The paper also looks at examples where paediatric palliative care has been provided in resource-poor settings highlighting the key element of an effective programme as being:

  • Clear and strong leadership
  • Focused on the vision
  • Linked to what makes the programme unique
  • Different components of care
  • Holistic approach to care
  • Clear strategy
  • In touch with changes in the environment
  • Adaptable (but not losing focus)
  • Consistency in approach
  • Acceptance by the community and collaboration
  • Access to a variety of education programmes

To read the full text or to download the paper, go to: http://www.mdpi.com/2227-9067/5/2/27

Inspiration, Innovation, Integration – get it all at #ICPCNCON3

The 3rd ICPCN Conference taking place in Durban, South Africa in May and June this year promises to be a unique and enriching experience for those who attend.

With an exciting and diverse line-up of world class speakers and a programme designed to provide inspiration and information for all members of the multi-disciplinary team, time is running out for you to book your spot.

Speakers

Conference speakers have been confirmed. You won’t want to miss out on this once in a lifetime opportunity to be inspired and informed by the impressive line-up of invited plenary speakers at the conference. These include:

  • Dr Marie-Charlotte Bouësseau Adviser at the Dept. of Service Delivery and Safety at the WHO
  • Dr MR Rajagopal  2018 Nobel Peace Prize nominee and founder chairman of Pallium India
  • Sister Frances Dominica (OBE) Founder of Helen House, the very first children’s hospice
  • Dr Satbir Jassal (MBE)  Chair and editor of the APPM Master Formulary and editor of the Rainbows Children’s Hospice Symptom Control Manual
  • Prof Danai Papadatou Professor of Clinical Psychology at the National Kapodistrian University in Athens
  • Kelly du Plessis CEO and Founder of Rare Diseases South Africa

Visit the conference website for information on all the invited speakers and to view the latest draft version of the conference programme.

Workshops

A full day of pre-conference workshops have been finalised for the conference and can be booked separately or along with your registration. These workshops draw on a pool of incredible expertise to bring you the most innovative ideas and allow you the chance to interact with presenters. These 7 workshops are as follows:

  1. Children’s Palliative Care in Humanitarian situations  A half day workshop presented by Joan Marston (PALCHASE) and Prof Danai Papadatou.
  2. Reaching out to develop a children’s palliative care programme A half day workshop presented by Paul Quilliam (Hummingbird House Australia) and Lynda Gould (Butterfly House in China)
  3. Perinatal Palliative Care A half day workshop presented by Dr Chakrapani Vasudevan, Dr Justin Baker and Dr Rut Kiman.
  4. Ethics in Children’s Palliative Care. A half day workshop presented by Dr Julia Ambler, Dr Delia Birtar and Dr Richard Hain.
  5. Difficult conversations in Children’s Palliative Care A half-day workshop presented by Tracey Brand, Dr Marianne Phillips and Dr Hanneke Brits.
  6. Research in Children’s Palliative Care A half day workshop presented by Prof Julia Downing, Jan Aldridge and Marie Friedel.
  7. Managing pain in Children’s Pallaitive Care from birth to young adulthood A full day workshop presented by Dr Sat Jassal, Dr Regina Okhuysen-Cawley, Dr Michelle Meiring, Dr Catherine Habershy and Dr Pat Carragher.

Events

The organisers have lined up a number of exciting events for delegates attending the 3rd ICPCN Conference. These include:

  • A Welcome Reception hosted by the city of Durban and held at the famous uShaka Marine World on the Durban beachfront. Speakers at this event include the city’s mayor, the conference chair and Sister Frances Dominica.
  • Film premiere  The conference will be host to the premiere showing of the life story of Nobel Peace Prize nominee, Dr M R Rajagopal in the film HIPPOCRATIC 18 Experiments in Gently Shaking the World
  • A Gala Dinner which will take place at the stunning Southern Sun Elangeni Hotel. Delegates will be encouraged to wear traditional attire to this event.

Meet the expert sessions

The conference will hold a number of early morning 50 minute ‘meet the experts’ sessions where delegates can learn from the ‘best of the best’ and will be given the opportunity to ask questions and enter into important discussions on the topics being presented. These will include:

  • Managing complex symptoms  Drs Sat Jassal, Hanneke Brits and Regina Okhuysen-Cawley
  • Therapeutic Touch: 5 simple strokes to use each day  Marie Wrinn
  • Advocacy in Children’s Palliative Care Stephen Connor, Busi Nkosi and Kelly du Plessis
  • Psychosocial issues in Children’s Palliative Care Danai Papadato and Tracey Brand
  • Architectural innovation for paediatric health design in resource constrained countries Edwina Fleming (South Africa) and Amruta Talawadekar (India)
  • Children’s Palliative Care in SADC countries Dr Michelle Meiring, Busi Nkosi and Chenjari Bhodeni

Registration

Registration for the conferences will close on Monday 20 May 2018. You have 3 days left to submit a late breaking abstract and 10 days to apply for a full or partial registration scholarship.

Visit the conference website

Children’s Palliative Care arrives in Mozambique

ICPCN Trainers and 19 Mozambican health professionals celebrate a week of training on children’s palliative care

A partnership between Mozambique Palliative Care Association (MOPCA), African Palliative Care Association (APCA), True Colours Trust (TCT) and ICPCN has resulted in the training in children’s palliative care of 19 Mozambican health professionals. The training took place from 19 – 23 March 2018. Alex Daniels, Education Officer for ICPCN, filed the following report.

The first ICPCN introductory course on Children’s Palliative Care commenced on a hot, sticky Monday morning in Maputo. Eleven nurses and eight paediatricians attended the training that was held in the Unidade da Dor (Pain Unit) on the sprawling grounds of Maputo General Hospital. The training was led by Busi Nkosi and Alex Daniels from ICPCN with guest lecturer support from Dr Angelina Dias (MOPCA) and Professor Joao Schwalbach (Comite Nacional De Bioetica Para A Saude).

A range of topics including communication with children and families, pain assessment and management, ethics, child development and play, grief and bereavement were presented. Much robust discussion ensued via Liliana Donaldo, the young enthusiastic interpreter. The week long training ended on a rainy Friday afternoon with participants keen to apply their newly acquired Children’s Palliative care knowledge and skills. A few participants expressing the wish and determination to make attending the 3rd ICPCN conference to be held in Durban, South Africa in May, a reality.

It was affirming to engage with a group of warm receptive health care professionals who had clearly identified the benefits of adopting a palliative care approach. Despite numerous challenges including access to oral morphine they appear willing to play their part in developing the field. What will need to follow is a commitment from funders, policy makers and other partner organisations to support Children’s Palliative Care further in a country where the need is great.

Scholarships and call for late breaking abstract submissions for ICPCN Conference

Building on the success of the first ICPCN conference in Mumbai, India (February 2014), and the 2nd in Buenos Aires (May 2016), the ICPCN is delighted to bring you the 3rd ICPCN Conference: Inspiration, Innovation, Integration to take place in Durban, South Africa from Wednesday 30 May – Saturday 2 June 2018. The conference aims to bring together people from around the world and from all professions working with children with life-threatening and life-limiting conditions and encourage the exchange of knowledge, new and innovative ideas, research and experiences between them.

With a line up of world class keynote speakers, who include Dr Marie Charlotte Bouesseau from the World Health Organization and Nobel Peace Prize nominee from Pallium India, Dr MR Rajagopal, the conference programme promises to provide rich opportunities for professional development and networking and will begin with a full day of pre-conference workshops on 30 May 2018.

The Conference Organising Committee has today announced that they have made available a number of full and partial registration scholarships and have made a Late Breaking call for abstracts for poster presentations for the conference.

Announcing the scholarships and the call for late breaking abstracts, Professor Julia Downing, conference chair and Chief Executive of the ICPCN said, “We are thrilled to be able to offer these full and partial scholarships for our conference and hope that as many people as possible will take this opportunity to apply. The speakers we have secured and the dynamic programme we have put together will ensure that all who attend will benefit enormously. Don’t delay, apply for a scholarship and submit an abstract today!”

Registration Scholarships
A number of full and partial registration scholarships have been made available for the 3rd ICPCN Conference in Durban.  Deadline to apply is 14 April, 2018 and results will be announced by 20 April 2018.

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

  • Be current ICPCN members. If you wish to apply and are not an ICPCN member, you may join here.
  • Be working with children who have life limiting and/or life threatening illnesses.

Preference will be given to applicants who:

  • have been ICPCN members for two or more consecutive years.
  • work for an institution that is an ICPCN member.
  • are living in Lower, Lower-Middle and Upper-Middle income categories as per the World Bank income classification data. See here. However, people working in High Income countries may also apply and will be considered.
  • are dedicated full-time to palliative care in their current work.
  • have an accepted abstract for poster or oral presentation.
  • 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.

It is important to note that these scholarships are for registration only and applicants will need to cover the remaining portion of the registration fee, travel and accommodation.

Apply for a scholarship here.

Late Breaking Call for Abstracts

This is your final opportunity to have an abstract accepted for the conference.  All members of the multidisciplinary team, including students, researchers, professionals, volunteers and parents are welcome to submit abstracts.

Your abstract should fall into one of the following three topic areas:

  1. Inspiring others about Children’s Palliative Care
  2. Innovations in Children’s Palliative Care
  3. Integration of Children’s Palliative Care in Health, Social & Education Systems

Deadline for abstract submission is 7 April 2018. Submit your abstract here.

First Czech led Introductory Course in Children’s Palliative Care

The first ICPCN introductory course on Children´s Palliative Care led by Czech lecturers was held in Prague from 15th – 17th March 2018.

A wide range of topics such as pain assessment and pain management, child development and play in children’s palliative care and communication with children and families were presented by Mahulena Mojzisova, M.D., chair of the Section of Children´s Palliative Care of the Czech Society for Palliative Medicine and Jitka Kosikova, member of the Section of Children´s Palliative Care.

Participants were very positive in their evaluation of the course.

The Section of Children´s Palliative Care of the Czech Society for Palliative Medicine is proud to cooperate with ICPCN and happy to announce, that the next introductory courses will be held in April and May.