Can children be supported to make decisions about their own health care?

Nobody likes being left out, especially when it comes to making decisions that can have a big effect on you. There’s a lot of discussion in the NHS at the moment around shared decision making and it mostly focuses on adults. But what about the children…Won’t somebody please think of the children?!

From a children’s rights perspective the maxim “nothing for us without us” applies to health care. It is important that children are afforded the same rights as adults, as far as possible, when it comes to making decisions about their health. We already know that when children are involved in making decisions about their own health care they feel less anxious (Moore 2010) and may be more likely to adhere to the chosen treatment. A child’s ability to make decisions about their care will be affected by their capacity to understand the treatments being offered and the consequences of their decisions as well as their experience with illness.

Despite the benefits to children being involved in decisions about their health care, children are often left out of the decision making process. This may be because health professionals or parents don’t think the child is able to engage in the decision making process.

It’s not all bad news though, there have been some attempts to help children become more involved in their care. Training doctors or parents to communicate better with children is one approach. An alternative is to help the children themselves. Feenstra et al. (2014) recently published their systematic review of interventions designed to support children’s engagement with making health related decisions.

Interventions have been designed to help children make health related decisions

Interventions have been designed to help children make health related decisions

Methods

The authors conducted the systematic review based on the guidelines in the Cochrane Handbook of Systematic Reviews of Interventions -the review bible for most SR geeks! They conducted a comprehensive search of 12 databases, including a dissertation and theses archive along with informal searches of google scholar and one other relevant website.

The authors included peer-reviewed studies of interventions to support children’s health related decision making needs. Studies had to have measured at least one outcome relating to children’s decision quality or decision making process. Children were defined as 18 years or younger and must have been facing a health-related decision. RCTs, non-randomised CTs, interrupted time series and controlled before and after studies were all included. Only papers published in English or French were included.

Not included were studies on hypothetical decision making or interventions supporting information needs only. They also excluded qualitative, descriptive and cohort studies. Papers in languages other than English or French were excluded. Unpublished studies were not included.

Cochrane Risk of Bias tool was used to assess the quality of RCTs and adapted Risk of Bias tables were used to assess other study designs.

Results

Of 4313 unique citations identified by the searches 5 studies (3 RCTs, 1 non-randomized CT, 1 controlled before and after design) met the inclusion criteria. All 5 were published in English and the studies carried out in the USA.

The small number of studies and the extent of differences between these studies (in terms of study design and outcomes measured) meant that meta-analysis was not possible. Authors instead presented a narrative summary of findings.

Commentary       

The review was inclusive in terms of study design, had a comprehensive search of published peer-reviewed sources and data extraction procedures appear to be very good.

Limitations: language restrictions, publication bias – did not attempt to find unpublished sources.

We cannot make any firm conclusions on the basis of this review because there were:

  • A small number of studies
  • Lack of overlap in measures used
  • Use of unpublished measures
  • Differences in the health conditions studied
  • Differences in the interventions studies
  • Contradictory findings

In one good quality study there did appear to be better outcomes when parents and children were coached together, but this was only in one study on end of life care options for adolescents with HIV.

We know that it's a good idea to include children in making decisions, but we don't yet know the best way to do this

We know that it’s a good idea to include children in making decisions, but we don’t yet know the best way to do this

Decision making about health behaviours and health care will be different for parents, children and clinicians. What matters to clinicians may not matter to children at all. The things that children care about may be totally different from the key clinical outcomes. It is important that children are included in decisions about their own health. According to this review we don’t yet know the best way to help children make decisions that they, their parents and clinicians will be satisfied with. It looks as though supporting parents and children together may be a promising approach for engaging children in making decisions about themselves, for themselves.

Links

Feenstra B, Boland L, Lawson ML, Harrison D, Kryworuchko J, Leblanc M, Stacey D. (2014) Interventions to support children’s engagement in health-related decisions: a systematic review. BMC Pediatr. Apr 23;14:109. doi: 10.1186/1471-2431-14-109.

Moore, L. and Kirk, S. (2010), A literature review of children’s and young people’s participation in decisions relating to health care. Journal of Clinical Nursing, 19: 2215–2225. doi: 10.1111/j.1365-2702.2009.03161.x