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Childhood Cancer Healthcare Research

Research group leader

Pernilla Pergert

Enhet: Avdelningen för Barnonkologi
Institution: Institutionen för kvinnors och barns hälsa (KBH), K6
E-post: Pernilla.Pergert@ki.se

We conduct research in the following areas:

  • Intercultural Care & Clinical Ethics
  • Psychological and socio-economic childhood cancer research
  • Palliative care in pediatric oncology

Research projects

Intercultural Care & Clinical Ethics

The research aims at improving paediatric cancer care through increased knowledge about: 1) interactions and communication between patients/families and healthcare professionals with different cultures/languages and 2) ethically difficult situations in care, as well as methods for clinical ethics support (CES) and how these can assist healthcare professionals in dealing with ethically difficult situations. The research combines qualitative and quantitative methods in an attempt to use the method that offers the best chance to answer the research questions. Mainly self-reported data are collected through interviews (individual and focus groups) or questionnaires.

Intercultural care includes studies on experiences of healthcare professionals, parents and interpreters in childhood cancer care. Ongoing projects include:

  • Interpreters experiences of difficult conversations in health care
  • Communication over language barriers – A national survey with healthcare professionals in paediatric oncology
  • Communication over language barriers – A Nordic survey with healthcare professionals in paediatric cancer care
  • Communication over language barriers in highly specialized paediatric care–an observational study of the child and family perspective

Clinical ethics includes studies on CES and ethics case reflection (ECR) rounds in the healthcare team as well as studies on the ethical climate and moral distress in childhood cancer care. Ongoing projects include:

  • Moral distress and the ethical climate – A national survey with healthcare professionals in paediatric oncology
  • Moral distress and the ethical climate – A Nordic survey with healthcare professionals in paediatric oncology
  • Evaluation of ethics support–What is the impact of moral case deliberations on paediatric oncology?
  • Children and adolescents as donors of stem cells to their seriously ill siblings

Psychological and socio-economic childhood cancer research

The research aims at increased knowledge of the situation of parents and siblings of a child diagnosed with cancer. Studies include a national cohort study of mothers and fathers of children diagnosed with cancer 2004-2009, describing the socioeconomic effects of childhood cancer on parents’ gross income, income from employment, and reliance on/use of social benefit. The aim of the SibsCan study is to develop internet-based psycho-social support for siblings. The study covers siblings, aged 15-35, of patients undergoing treatment or whose treatment is complete, as well as siblings who have lost a brother or sister to cancer.

Palliative care in pediatric oncology

Psychosocial support to the family from diagnosis to bereavement

This area of research focuses on development and evaluation of psychosocial support to the child and the family from the beginning of the illness trajectory to the end, and for some into bereavement. It involves support programs and other support functions, e.g. communication tools about illness-related experiences among children, and sibling-support.

Psychological distress among bereaved parents and siblings

Research in this area involve nationwide surveys among parents and siblings who have lost a child/brother or sister to cancer and focus on grief, experiences of illness and care, and psychological health. Identification of avoidable and modifiable family-and care related factors that influence psychological distress years after bereavement may lead to tailored care and thereby reduced distress in family members.

Healthcare communication – delivery of bad news

In pediatric oncology care delivering of bad news is not uncommon. How to do it, when, and to whom is also studied. The communication about changed treatment intentions (“break point conversations”) between physicians and the family are also explored.

Group members

Research leader

Pernilla Pergert, Pediatric Nurse Specialist, PhD, Associate Professor

Intercultural Care & Clinical Ethics

Kim Lützén, Reg. Nurse, PhD, Professor
Margareta af Sandeberg, Paediatric Nurse Specialist, PhD, Postdoc
Elisabet Tiselius, Interpreter, PhD, Postdoc
Cecilia Bartholdson, Paediatric Nurse Specialist, PhD, Postdoc
Johanna Granhagen Jungner, Reg. Nurse, MSc, PhD-student
Carina Rinaldo, Paediatric Nurse Specialist, PhD-student
Päivi Ventovaara, Paediatric Nurse Specialist, PhD-student
Charlotte Weiner, Reg. Nurse, MSc

Collaborating researchers

Helena Bani Shoraka, PhD, Stockholm University
Klas Blomgren, MD, PhD, Professor, KI
Anders Castor, MD, PhD, Lund University
Ulla Forinder, Ass Professor, KI
Britt-Marie Frost, MD, PhD, Uppsala University
Lill Hultman, Social worker, PhD, KI
Bert Molewijk, PhD, Ass Professor, VU Medical Center, Amsterdam, the Netherlands
Margaretha Stenmarker, MD, PhD, Gothenburg University
Marika Wenemark, Statistician, PhD, Linköping University
Ingrid Øra, PhD, Ass Professor, Lund University

Psychological and socio-economic childhood cancer research

Emma Hoven, PhD
Annika Lindahl Norberg, Reg. psychologist, PhD, Ass Professor
Sofia Hjelmstedt, PhD-student

Collaborating researchers

Matteo Bottai, Statistician, Professor, KI
Ulla Forinder, Ass Professor, KI
Ida Hed Myrberg, Statistician, KI
Mats Heyman, MD, Ass Professor, KI
Gun Johansson, PhD, KI
Scott Montgomery, Professor, Örebro University
Lotta Nybergh, Postdoc, KI
Anneli Silvén Hagström, PhD student, Linköping University

Palliative care in pediatric oncology

Ulrika Kreicbergs, Reg. nurse, PhD, Professor in palliative care, Ersta Sköndal Bräcke University College, Associated to KI.
Malin Lövgren, Reg. nurse, PhD, Associate Professor in palliative care, Ersta Sköndal Bräcke University College, Associated to KI.

Collaborating researchers

Josefin Sveen, Psychologist, PhD, Associate Professor, Ersta Sköndal Bräcke University College, Uppsala University
Camilla Udo, counselor, PhD, Post-doc, Ersta Sköndal Bräcke University College, Dalarna University
Margaretha Jernholt Nolbris, Paediatric nurse specialist, PhD, Associate Professor, University of Gothenburg
Stefan Nilsson, Paediatric nurse specialist, PhD, Associate Professor, University of Gothenburg
Li Jalmsell, MD, PhD, Post-doc, Karolinska University hospital, Ersta Sköndal Bräcke University College
Lilian Pohlkamp, Reg. nurse, psychotherapist, PhD student, Ersta Sköndal Bräcke University College, Associated to KI
Nina Mogensen, MD, PhD-student, KI
Mats Heyman, MD, Associate Professor, KI
Arja Harila-Saari, MD, Professor, Uppsala University
Holly G Prigerson, MD, Professor, Center for Research on End of Life Care, Weill Cornell Medicine, New York City, New York, USA

Networks

Intercultural Care & Clinical Ethics

The members of the research team are active in the following networks:

  • International Society of Paediatric Oncology (SIOP)
    - SIOP Nursing
  • Nordic Organization for Paediatric Oncology (NOPHO)
  • Nordic organization for paediatric oncology nurses (NOBOS)
  • NOPHO/NOBOS Working Group on Ethics
  • Swedish network for PhD-nurses doing research in paediatric health care
  • Grounded theory methodology seminars, LIME, KI
  • Healthcare Sciences at Children’s and Women’s Healthcare, Karolinska University Hospital and KI
  • Interpreting research in health care

Psychological and socio-economic childhood cancer research

The members of the research team are active in the following networks:

  • U-CARE, Uppsala University

Palliative care in pediatric oncology

  • The Research Network “Children as next-of-kin”, The Swedish Family Care Competence Center (UK, ML)
  • The International Society of Paediatric Oncology (SIOP Nursing) (ML)
  • The Swedish Network in Paediatric Palliative Care (UK, ML)
  • The Swedish Palliative Network (SPN) (UK, ML)
  • The Swedish network for PhD-nurses doing research in paediatric health care (UK, ML)