Paediatric palliative oncology in a family perspective

In Sweden, around 250 children are diagnosed with cancer every year. Modern treatment strategies have increased overall survival that today is approaching 80 per cent. But not every child is cured. One out of five children diagnosed with a malignancy will die from the cancer. The death of the child affects the whole family: Previous research has showed that bereaved parents and siblings suffer from long-term psychological morbidity due to the death of the child.

This PhD-project focuses on palliative care and end-of-life care in pediatric oncology with a focus not only on the child, but also how different aspects in the end-of-life care affect bereaved family-members long-term.

Aims

In this project, we will

1. Examine to what extent there is a shift in focus on palliative care in the departments if paediatric oncology in Sweden
2. Examine which symptoms bereaved parent regard as affecting their dying child the most in the end-of-life period and if there is a relation between these symptoms and long-term psychological well-being in parents who have lost a child.
3. Examine if there is a relation between treatment intensity in the child (in the form of hematopoietic stem cell transplantation) and psychological well-being in bereaved parents.
4. Examine how parents and dying children communicate about death.
5. Examine how children suffering from cancer view their need for information regarding diagnosis and prognosis and possible treatment-failure.
6. Examine how bereaved siblings experience the death of their brother or sister.

The project in designed with as a mixed method study based on data from medical records, questionnaires with bereaved family members and interviews with children who suffer from cancer. Both quantitative and qualitative analyses will be used in different parts of the project.

Format

PhD project

Funding

The Swedish Childhood Cancer Foundation (Barncancerfonden)

Time table

2009-2015

Publications

Jalmsell L, Kontio T, Stein M, Henter JI, Kreicbergs U, On the Child's Own Initiative: Parents Communicate With Their Dying Child About Death, Death Stud. 2014 Aug 25. DOI: 10.1080/07481187.2014.913086 [Epub ahead of print]

Jalmsell L, Forslund M, Hansson MG, Henter JI, Kreichbergs U, Frost BM, Transition to noncurative end-of-life care in paediatric oncology: a nationwide follow-up in Sweden, Acta Paediatrica 2013;102(7):744-748

Jalmsell L, Kreicbergs U, Onelöv E, Steineck G, Henter JI, Anxiety is contagious-symptoms of anxiety in the terminally ill child affect long-term psychological well-being in bereaved parents, Pediatr Blood Cancer, 2010;54(5):751-7.

Jalmsell L, Onelöv E, Steineck G, Henter JI, Kreicbergs U, Hematopoietic stem cell transplantation in children with cancer and the risk of long-term psychological morbidity in the bereaved parent, Bone Marrow Transplant, 2011:46(8):1063-70.

Jalmsell L, Kreicbergs U, Onelöv E, Steineck G, Henter JI, Symptoms affecting children with malignancies during the last month of life: a nation wide follow-up. Pediatrics, 2006;117(4):1314-20

Poster presentations

On the child's own initiative: SIOP 2014 (46th Congress of the International Society of Paediatric Oncology) 22-25 October 2014. Toronto Canada

When there is no chance of cure: NOPHO 2012 (30th Annual Meeting of the Nordic Society of Paediatric Haematology and Oncology) 19-22 May 2012. For her oral presentation and poster, Li Jalmsell was one of two winners of the NOPHO Prize 2012, awarded to the best presentations given by Young NOPHO members.

Contact

Li Jalmsell, MD, PhD Student

Supervisors

Mats G. Hansson, Professor of Biomedical Ethics

Britt-Marie Frost, Department of Paediatric Oncology, Uppsala University Hospital (Akademiska sjukhuset)

Jan-Inge Henter, MD, Professor. Chidhood Cancer Research Unit, Karolinska University Hospital

Ulrika Kreicbergs, RN, Professor, Ersta Sköndal University College