“Don't be afraid to speak up”: Communication advice from parents and clinicians of children with cancer

Background: Parents and clinicians of children with cancer can provide advice to improve communication that reflects lessons learned through experience. We aimed to identify categories of communication advice offered to parents of children with cancer from clinicians and other parents. Procedure: (1) Semi-structured interviews with 80 parents of children with cancer at three sites; (2) single-item, open-ended survey administered following 10 focus groups with 58 pediatric oncology clinicians at two sites. We asked participants for communication advice to parents, and analyzed responses using semantic content analysis. Results: Parents provided five categories of communication advice to other parents. Advocacy involved asking questions, communicating concerns, and speaking up for the child. Support involved pursuing self-care, seeking and accepting help, and identifying supportive communities. Managing information involved taking and organizing notes, remaining open to difficult truths, and avoiding inaccurate information. Partnership involved establishing open lines of communication with clinicians, making the family's values and priorities known, and trusting the clinical team. Engaging and supporting the child involved, understanding and incorporating the child's preferences and values, and creating a loving environment. Clinicians’ advice addressed similar categories, although only one clinician described engaging and supporting the child. Furthermore, parental advice expanded beyond interactions with the clinical team, whereas clinician advice focused more on the role of clinicians. Conclusions: Parents and clinicians of children with cancer provided five categories of communication advice. With these data, clinicians, health care organizations, support groups, and patient advocates could offer experience-informed advice to parents who are seeking information and support.