Ways of helping children with cancer to take part in decisions about their health care

Review question

We reviewed the evidence about what helps children with cancer to take part in decisions about their health care. We found no studies.

Background

Cancer is a serious illness that involves complex treatments with unpleasant side effects. Children with cancer generally prefer to be involved in some way in decisions about their care and treatment. Involving children in decisions about their health care can help their understanding of the disease and treatment, reduce their fears, help them feel more prepared and to cope better with their cancer.

Study characteristics

The evidence is current to 29 February 2016. We did not find any studies that helped children to participate in decision-making with parents and healthcare staff.

Key results

At the moment, there is no evidence on ways of helping children with cancer take part in decisions about their health care. We need more high-quality research before definitive conclusions can be made.

Quality of the evidence

Not applicable as no eligible studies were found.

Authors' conclusions: 

No conclusions can be made on the effects of interventions to promote SDM for children with cancer aged four to 18 years. This review has highlighted the dearth of high-quality quantitative research on interventions to promote participation in SDM for children with cancer. There are many potential reasons for the lack of SDM intervention studies with children. Attitudes towards children's participation are slowly changing in society and such changes may take time to be translated or adopted in healthcare settings. The priority may be on developing interventions that promote children's participation in communication interactions since information-sharing is a prerequisite for SDM. Restricting this review to RCTs was a limitation and extending the review to non-randomised studies (NRS) may have produced more evidence. For this update, we included only RCTs and CCTs. Clearly more research is needed.

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Background: 

This is an update of the Cochrane systematic review of shared decision-making (SMD) making published in 2013. Children's rights to have their views heard in matters that affect their lives are now well established since the publication of the UN Convention treaty (1989). Children with cancer generally prefer to be involved in decision-making and consider it important that they have the opportunity to take part in decision-making concerning their health care, even in end-of-life decisions. There is considerable support for involving children in healthcare decision-making at a level commensurate with their experience, age and abilities. Thus, healthcare professionals and parents need to know how they should involve children in decision-making and what interventions are most effective in promoting SDM for children with cancer.

Objectives: 

To examine the effects of SDM interventions on the process of SDM for children with cancer who are aged four to 18 years.

Search strategy: 

We searched the following sources for the review: Cochrane Central Register of Controlled Studies (CENTRAL) (the Cochrane Library 2016, Issue 1); PubMed (NLM) (1946 to February 2016); Embase (Ovid) (1974 to February 2016); CINAHL (EBSCO) (1982 to February 2016); ERIC (ProQuest) (1966 to February 2016); PsycINFO (EBSCO) (1806 to February 2016); BIOSIS (Thomson Reuters) (1980 to December 2009 - subscription ceased at that date); ProQuest Dissertations and Theses (1637 to February 2016); and Sociological Abstracts (ProQuest) (1952 to February 2016). In addition we searched the reference lists of relevant articles and review articles and the following conference proceedings (2005 up to and including 2015): American Academy on Communication in Healthcare (AACH), European Society for Medical Oncology (ESMO), European CanCer Organisation (ECCO), European Association for Communication in Healthcare (EACH), International Conference on Communication in Healthcare (ICCH), International Shared Decision Making Conference (ISDM), Annual Conference of the International Society for Paediatric Oncology (SIOP) and Annual Scientific Meeting of the Society for Medical Decision Making (SMDM). We scanned the ISRCTN (International Standard Randomised Controlled Trial Number) register and the National Institutes of Health (NIH) Register for ongoing trials on 29 February 2016.

Selection criteria: 

For this update, we included randomised controlled trials (RCTs) and controlled clinical trials (CCTs) of SDM interventions for children with cancer aged four to 18 years. The types of decisions included were: treatment, health care and research participation decisions. The primary outcome was SDM as measured with any validated scale.

Data collection and analysis: 

Two review authors undertook the searches, and three review authors independently assessed the studies obtained. We contacted study authors for additional information.

Main results: 

No studies met the inclusion criteria, and hence no analysis could be undertaken.

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