Kopstoring: online preventative course for children of parents with a mental illness or substance abuse problems
Children of parents with a mental illness or substance abuse problems (abbreviated as COPMI and COSAP, respectively) have a high risk (50–66%) of developing the same problems. This has an impact on their health, wellbeing, social network and overall functioning. In an effort to prevent these problems, the Trimbos Institute collaborated with several mental health institutes to develop the online preventative course Kopstoring for children and young adults. Kopstoring is available nationwide. On 16 December 2016, Marla Woolderink obtained her PhD for her evaluation of this course. The process evaluation revealed that both the participants and the practitioners were positive about their expectations of and experiences with the course. The results of the clinical evaluation do not show any effects. In fact, it was found that clinical research on online interventions is severely hampered by outdated medical legislation, the current financial climate, the current youth care system and methodological problems.
Awareness and understanding
The scope and severity of the problems experienced by COPMI and COSAP children is underrated in the Netherlands. The number of children who have a parent with a mental illness or addiction problems is extremely high. In the Netherlands, 17% or one in six children under the age of eighteen are raised in a family in which one or both parents suffer from mental health or addiction issues. In addition to the scope and severity of the problem, it's also important to focus on the nature of the problem. Scientific studies have shown that children of parents with mental health or addiction problems are more likely on a genetic, biological and psychiatric level to develop the same problems or disorders as their parents. While interventions are in place for this vulnerable group, they often focus on the family as a whole or exclusively on the patient (i.e. the parent). This dissertation therefore focused on an intervention that was specifically developed for young adult children (16 to 25 years old) of parents with mental health or addiction problems.
The dissertation detected a fundamental problem with the Medical Research Involving Human Subjects Act (Wet medisch-wetenschappelijk onderzoek met mensen, WMO). This act requires written informed consent from the participants of a medical research study, which makes e-research unnecessarily complicated and even impossible in some situations. A large percentage of online research studies focus on interventions aimed at treating or preventing sensitive issues (e.g. sexual dysfunction, addiction or child abuse). Maintaining the anonymity of the subjects during online treatment and online research is an important precondition for participating in research and treatment programmes like these. But the word 'written', as included in the WMO Act, is strictly interpreted as 'on paper', which means participants are not authorised to give their consent by any other means (e-mail, check mark or mouse click).
A second requirement of the WMO Act that unnecessarily complicates research is that involving minors, particularly minors aged 16 and 17. Giving their own informed consent to participate in online research is not enough for this group; their parents must also give their informed consent before their children can participate in online research. This can seriously undermine the privacy of the participants, making it extremely difficult if not impossible to recruit candidates. The privacy of participants in online research studies must be maintained at all times, taking into account the fact that the participants have to be traceable for research purposes.
Change in legislation
In her study, Marla Woolderink recommends amending the WMO Act. She describes and compares the various ages at which an individual can make legally binding decisions about their own treatment (age sixteen, according to the Medical Treatments Contracts Act) and about research regarding this treatment (age eighteen). This inconsistency means that sixteen-year-olds can decide to participate in an intervention such as Kopstoring, but can only decide to participate in a study examining the effects of this online course when they turn eighteen. A proposal to amend the WMO Act was recently submitted and approved by the Dutch Upper and Lower Houses of Parliament, which means sixteen-year-olds will soon be able to participate in research without their parents' consent.
This initiative is in line with a letter sent by Minister Schippers in June to the Lower House of Parliament about the scope and severity of the problems these children experience. In-depth discussions are also underway with the children's ombudsman to raise more awareness and understanding for this target group. In addition, more money is being earmarked for online interventions.
Marla Woolderink defended her dissertation on 16 December. This PhD defence also opened a symposium organised by UM on this theme. Other speakers included Dr Rianne van der Zanden, project leader at the Trimbos Institute, and a course participant, who shared her own experiences with Kopstoring and what it's like growing up with a parent with mental health or addiction problems.