Pediatric cancer communication in low‐ and middle‐income countries: A scoping review

The burden of global childhood cancer lies in low‐ and middle‐income countries (LMICs). Communication is essential to pediatric cancer care, and the National Cancer Institute (NCI) has defined 6 functions of communication between patients, family members, and providers, including 1) fostering healing relationships, 2) responding to emotions, 3) exchanging information, 4) making decisions, 5) managing uncertainty, and 6) enabling self‐management. Nevertheless, communication needs and practices in LMICs remain incompletely understood. For this review, the Web of Science, Scopus, PubMed, and Turning Research Into Practice databases were searched according to the Preferred Reporting Items for Systematic Reviews and Meta‐Analysis Extension for Scoping Reviews. Searching identified 2988 articles, with 11 added through snowballing. Forty articles met the inclusion criteria. Two reviewers extracted data on study characteristics, communication functions, enablers, barriers, and additional major themes. This review included work from 17 countries. Most studies (85%) used qualitative methodology; the number of participants ranged from 7 to 304. All 6 of the NCI‐defined communication functions were identified in included studies, with rates ranging from 100% of studies for information exchange to 28% of studies for decision making. Communication barriers included cancer misconceptions, stigma, and hierarchy between parents and providers. Provider training and community education facilitated communication. Additional themes included disclosure to children, family dynamics, and the multidisciplinary health care team. In conclusion, all 6 of the communication functions defined by the NCI were applied by pediatric cancer researchers in LMICs. Additional barriers, enablers, and communication themes noted in LMICs deserve further exploration, and a relative paucity of research in comparison with high‐income countries highlights the need for further work.

[1]  M. Coleman,et al.  Sustainable care for children with cancer: a Lancet Oncology Commission. , 2020, The Lancet. Oncology.

[2]  A. Rosenberg,et al.  End-of-Life Communication Needs for Adolescents and Young Adults with Cancer: Recommendations for Research and Practice. , 2020, Journal of adolescent and young adult oncology.

[3]  P. Butow,et al.  Communication during childhood cancer: Systematic review of patient perspectives , 2019, Cancer.

[4]  Seyyed Nasrollah Hosseini,et al.  The global burden of childhood and adolescent cancer in 2017: an analysis of the Global Burden of Disease Study 2017 , 2019, The Lancet. Oncology.

[5]  R. Atun,et al.  Global childhood cancer survival estimates and priority-setting: a simulation-based analysis. , 2019, The Lancet. Oncology.

[6]  A. Rosenberg,et al.  Effective Communication for Newly Diagnosed Pediatric Patients With Cancer: Considerations for the Patients, Family Members, Providers, and Multidisciplinary Team. , 2019, American Society of Clinical Oncology educational book. American Society of Clinical Oncology. Annual Meeting.

[7]  R. Atun,et al.  Estimating the total incidence of global childhood cancer: a simulation-based analysis. , 2019, The Lancet. Oncology.

[8]  K. Stachowiak,et al.  Two is a perfect number: Patient–doctor relationship and patient attachment style in palliative care , 2019, Journal of health psychology.

[9]  S. Ziebland,et al.  Communication with children and adolescents about the diagnosis of their own life-threatening condition , 2019, The Lancet.

[10]  L. von Essen,et al.  Cancer-related concerns and needs among young adults and children on cancer treatment in Tanzania: a qualitative study , 2019, BMC Cancer.

[11]  Liming You,et al.  Unmet Family Needs Concerning Healthcare Services in the Setting of Childhood Hospitalization for Cancer Treatment in Mainland China: A Qualitative Study , 2019, Journal of pediatric nursing.

[12]  J. DuBois,et al.  Core Functions of Communication in Pediatric Medicine: an Exploratory Analysis of Parent and Patient Narratives , 2018, Journal of Cancer Education.

[13]  Zachary Munn,et al.  Systematic review or scoping review? Guidance for authors when choosing between a systematic or scoping review approach , 2018, BMC Medical Research Methodology.

[14]  J. McGowan,et al.  PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation , 2018, Annals of Internal Medicine.

[15]  Nerissa S. Bauer,et al.  Parent‐centered communication at time of pediatric cancer diagnosis: A systematic review , 2018, Pediatric blood & cancer.

[16]  J. Zulu,et al.  Challenges for health care providers, parents and patients who face a child hood cancer diagnosis in Zambia , 2018, BMC Health Services Research.

[17]  J. Baker,et al.  Communicating Effectively in Pediatric Cancer Care: Translating Evidence into Practice , 2018, Children.

[18]  A. Duarte,et al.  The strength of information on retinoblastoma for the family of the child , 2018 .

[19]  A. Duarte,et al.  A força da informação sobre retinoblastoma para a família da criança , 2018 .

[20]  J. DuBois,et al.  Communication in pediatric oncology: State of the field and research agenda , 2018, Pediatric blood & cancer.

[21]  E. Valdez-Martínez,et al.  Decision-making on therapeutic futility in Mexican adolescents with cancer: a qualitative study , 2017, BMC medical ethics.

[22]  Hanan El Malla Having a Child Diagnosed with Cancer: Raising the Challenges Encountered by the Caregivers at the Pediatric Oncology Ward in Egypt , 2017, Diseases.

[23]  L. Edwards,et al.  A descriptive qualitative study of childhood cancer challenges in South Africa: Thematic analysis of 68 photovoice contributions , 2017 .

[24]  G. Steineck,et al.  Cancer disclosure—account from a pediatric oncology ward in Egypt , 2017, Psycho-oncology.

[25]  P. Arbon,et al.  Information-sharing challenges between adolescents with cancer, their parents and health care providers: a qualitative study , 2017, Supportive Care in Cancer.

[26]  Á. L. C. Junior,et al.  Effects of pre-consultation lists on the communicative behavior of children with cancer and their caregivers , 2016 .

[27]  R. Manohar,et al.  First Counseling Revealing the Diagnosis of Childhood Cancer: Parent Preferences From an Indian Perspective , 2016, Journal of pediatric hematology/oncology.

[28]  R. Epstein,et al.  Effect of a Patient-Centered Communication Intervention on Oncologist-Patient Communication, Quality of Life, and Health Care Utilization in Advanced Cancer: The VOICE Randomized Clinical Trial , 2016, JAMA oncology.

[29]  L. Renner,et al.  Exploring factors influencing health-seeking decisions and retention in childhood cancer treatment programmes: perspectives of parents in Ghana. , 2016, Ghana medical journal.

[30]  Satish Kumar,et al.  Parent's Perspectives on the End-of-life Care of their Child with Cancer: Indian Perspective , 2016, Indian journal of palliative care.

[31]  M. Kohlsdorf,et al.  Associations between clinical and sociodemographic data and patterns of communication in pediatric oncology , 2016 .

[32]  L. Nascimento,et al.  Puppets as a strategy for communication with Brazilian children with cancer. , 2016, Nursing & health sciences.

[33]  Vineet M. Arora,et al.  Impact of Electronic Medical Record Use on the Patient–Doctor Relationship and Communication: A Systematic Review , 2016, Journal of General Internal Medicine.

[34]  J. Maree,et al.  The Information Needs of South African Parents of Children With Cancer , 2016, Journal of Pediatric Oncology Nursing.

[35]  M. Arruda-Colli,et al.  Experiences of Brazilian children and family caregivers facing the recurrence of cancer. , 2015, European journal of oncology nursing : the official journal of European Oncology Nursing Society.

[36]  W. Low,et al.  Parents' perspectives on the important aspects of care in children dying from life limiting conditions: A qualitative study. , 2015, The Medical journal of Malaysia.

[37]  Ching-Hon Pui,et al.  Toward the Cure of All Children With Cancer Through Collaborative Efforts: Pediatric Oncology As a Global Challenge. , 2015, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[38]  Á. L. C. Junior,et al.  A proposal for a behavioral pre-consultation: Analysis of the use of a protocol during consultations , 2015 .

[39]  G. Kaspers,et al.  Parental experiences of childhood cancer treatment in Kenya , 2015, Supportive Care in Cancer.

[40]  Jéssica Renata Bastos Depianti,et al.  Reactions of family members of children diagnosed with cancer: a descriptive study , 2014 .

[41]  A. Zargham-Boroujeni,et al.  Challenges of children with cancer and their mothers: A qualitative research , 2014, Iranian journal of nursing and midwifery research.

[42]  F. Aein,et al.  Giving Bad News: A Qualitative Research Exploration , 2014, Iranian Red Crescent medical journal.

[43]  E. Toruner,et al.  Exploring communication difficulties in pediatric hematology: oncology nurses. , 2013, Asian Pacific journal of cancer prevention : APJCP.

[44]  Maria Emília Limeira Lopes,et al.  The importance of communication in pediatric oncology palliative care: focus on Humanistic Nursing Theory. , 2013, Revista latino-americana de enfermagem.

[45]  Ebru Kilicarslan-Toruner,et al.  Information-seeking behaviours and decision-making process of parents of children with cancer. , 2013, European journal of oncology nursing : the official journal of European Oncology Nursing Society.

[46]  G. Steineck,et al.  Parental trust in health care—a prospective study from the Children's Cancer Hospital in Egypt , 2013, Psycho-oncology.

[47]  D. Arabiat,et al.  Unmet care needs of parents of children with cancer in Jordan: implications for bed-side practice. , 2013, Journal of clinical nursing.

[48]  H. Huijer,et al.  Lebanese parents' experiences with a child with cancer. , 2013, European journal of oncology nursing : the official journal of European Oncology Nursing Society.

[49]  A. Hamdan-Mansour,et al.  Children's knowledge of cancer diagnosis and treatment: Jordanian mothers' perceptions and satisfaction with the process. , 2011, International nursing review.

[50]  Jeffrey D Sachs,et al.  Expansion of cancer care and control in countries of low and middle income: a call to action , 2010, The Lancet.

[51]  Vinitha Jithoo To Tell or not to Tell; The Childhood Cancer Conundrum: Parental Communication and Information-Seeking , 2010 .

[52]  H. Caron,et al.  The guardians' perspective on paediatric cancer treatment in Malawi and factors affecting adherence , 2008, Pediatric blood & cancer.

[53]  C. Gundy,et al.  Parental Experiences of Childhood Leukemia Treatment in Indonesia , 2008, Journal of pediatric hematology/oncology.

[54]  M. Vasconcelos,et al.  Childhood cancer: maternal perceptions and strategies for coping with diagnosis. , 2007, Jornal de pediatria.

[55]  Richard L. Street,et al.  Patient-centered communication in cancer care: Promoting healing and reducing suffering , 2007 .

[56]  Sean A. Spence,et al.  Brave New Brain: Conquering Mental Illness in the Era of the Genome , 2001, BMJ : British Medical Journal.

[57]  J. Schaefer,et al.  Collaborative Management of Chronic Illness , 1997, Annals of Internal Medicine.

[58]  S. Kaplan,et al.  Assessing the Effects of Physician-Patient Interactions on the Outcomes of Chronic Disease , 1989, Medical care.

[59]  M. C. Minayo,et al.  Relationships between oncohematopediatrics, mothers and children in communicating bad news. , 2017, Ciencia & saude coletiva.

[60]  R. G. Lima,et al.  Secrets and truths in the process of family comunication with a child with canceri , 2016 .

[61]  A. Veerman,et al.  Parents' and health-care providers' perspectives on side- effects of childhood cancer treatment in Indonesia. , 2014, Asian Pacific journal of cancer prevention : APJCP.

[62]  T. Seth Communication to Pediatric Cancer Patients and their Families: A Cultural Perspective , 2010, Indian journal of palliative care.

[63]  M. Muckaden,et al.  Parental concerns in children requiring palliative care , 2008 .

[64]  Marcela Rosa Lins Rodrigues Beltrão Câncer infantil: percepções maternas e estratégias de enfrentamento , 2007 .

[65]  E. Lazcano-Ponce,et al.  The emotional response of families to children with leukemia at the lower socio‐economic level in central Mexico: A preliminary report , 2003, Psycho-oncology.