Preferences for participation in treatment decision making and information needs of parents of children with cancer: A pilot study

Abstract

This study was performed to obtain information on parents of children with cancer: (a) what role parents preferred to assume in treatment decision making (TDM); (b) parents' priority information needs; (c) if a relationship existed between TDM preferences and information needs; and (d) if sociodemographic, disease and treatment variables predicted TDM preferences or information needs. A cross-sectional survey was conducted with a convenience sample of 58 parents who had a child less than 13 years of age diagnosed with cancer in the previous year. Instruments included a Sociodemographic, Disease, and Treatment Questionnaire; the Control Preferences Scale for Pediatrics, and an Information Needs Questionnaire. The results showed that parents had systematic preferences about TDM, preferring collaborative followed by passive and active roles. Nine priorities in information needs (highest to lowest) were found: (a) treatments and tests, (b) cure, (c) caring for my child, (d) emotional impact, (e) side effects, (f) physical impact, (g) disease, (h) coping with painful procedures, and (i) impact on the family. Sociodemographic, disease and treatment variables were not predictive of preferences for TDM or information needs. Concrete informational needs take precedence over issues of emotional or family impact or pain. A low Kendall's coefficient (0.07) indicated that parents as a group do not have uniform information needs. Information giving must be individualized.

Parents’ information needs about the treatment of their chronically ill child: A qualitative study

“…Comparable outcomes were found by Pyke-Grimm et al [11], who indicated that treatment, prognosis and caring for the child were the top three priorities in information needs for parents with children with cancer. Parents' reasons for wanting this information included a wish to be able to understand the background to treatment decisions, reassurance, to feel involved in the child's care and to enable them to confidently answer their child's questions.…”

“…Although good information is necessary as a basis for patient and parent decisions, provision must be sensitively tailored to parents' individual requirements. However, the practical difficulties involved in achieving this are considerable, given the variable and changing responses of individual patients in different clinical settings [11][12][13][14]. These difficulties are particularly challenging in complex interactions involving a triad of parent, child and professional [4].…”

Parents' views of their children's participation in phase I oncology clinical trials

“…Parents stress a relational and collaborative, informed (child and health care provider) paradigm when making health care choices (Kirshbaum, 1996;Pike-Grimm, Degner, Small, & Mueller, 1999;Rushton, 1994). That is, they would like us to ask, what does it mean to you to be a good parent in this situation?…”

Adolescent Cancer and Health-Related Decision-Making: An Australian Multi-Perspective Family Analysis of Appointment Attendance and Involvement in Medical and Lifestyle Choices

“…Eligible survivors were all those who underwent cancer treatment before 18 years of age, were an adolescent (aged [12][13][14][15][16][17][18][19][20] at the time of interview at Sydney Children's Hospital (SCH), Australia, between 2007 and 2009, had completed treatment with curative intent, and were less than 5 years post-treatment. Eligible survivors' parents and siblings (aged q12 at interview) were also invited.…”

“…4,10 Research suggests that while involvement of adolescents as collaborators in decision-making is beneficial, [11][12][13] many young people do not want sole responsibility for medical decisions 12 and some desire a passive role. 2,11,14 Parents of pediatric patients have also described a desire to share decision-making with their child's multidisciplinary team (the specialists most relevant to the current issue of concern, such as an oncologist, fertility specialist, or radiologist), 11,[15][16][17] although their preferences may lie on a continuum ranging from maintaining absolute control of decision-making to deferring completely to their child's multidisciplinary team. 18 It is likely that parental satisfaction is determined by the match between their preferred and actual levels of involvement in decision-making.…”