Making Sure Young People and Families Have Their Say About Treatment For Depression

13/09/2016 13:46
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Almost 80,000 children in Great Britain suffer from serious depression, which is equivalent to the entire population of Bath. (1) When symptoms become unmanageable, many children and parents seek help from Child and Adolescent Mental Health Services, or CAMHS. These stand-alone clinics employ a variety of professionals from different mental healthcare disciplines - from psychiatrists to social workers. During a generic initial assessment at CAMHS, a young person, their parent and a therapist sit down together and discuss the difficulties that are affecting the child's life.

Ideally this discussion of what's troubling someone and how to help would be a collaborative process, where both the young person and carer leave the clinic feeling informed, empowered and more able to make a choice about their treatment or care. However, recent research has shown this is not consistently happening in CAMHS. In a national study, concerned parents described in interviews how deeply frustrated they felt about being left out of the treatment process.

"I would take her [my daughter] every week and I was never told anything I was just kept in the dark. At a first review with a psychiatrist, they told me what had been happening with my daughter with the assumption that I knew this. I found this meeting frustrating as I was being told new information, for which no one had told me about in the actual sessions or at the end of the sessions. This was quite difficult. I didn't need to know what my daughter was discussing but I would have liked to have been told what the plan was and certainly the direction of any treatment." (2)

Unfortunately such experiences are not uncommon and do not occur only among parents. Young people also feel that decisions about their treatment are being made without them. Although clinicians think that they are great at explaining treatment options, research shows that this is not true. Despite 83% of CAMHS clinicians reporting usually or always talking with young people about the range of treatment options that are available to them, only 30% of young people feel like they are given enough information to make a choice about treatment. (2) This demonstrates the discrepancy between clinicians' perceptions of care and a young person's actual experiences, and calls into question the currently held beliefs about what is actually good clinical practice.

Policy-makers in the United Kingdom are aware of the immense need for child involvement in mental healthcare and for improvement in the current delivery of care. The Department of Health stresses that young people are experts in their care and that they should be involved in its delivery. (Future in Mind) Additionally, the government has recently stated that treatment professionals should listen to young people's experiences and consider how well a treatment fits with the young person's particular life circumstances. Children and families should be empowered to make a shared decision about their treatment or care, which is a concept that has already been extensively researched and implemented in physical health care and has been associated with better treatment outcomes.

To help encourage shared decision making, the Dartmouth Center for Health Care Delivery Science in the United States has developed a tool called an "Option Grid." Option Grids are paper decision aids which contain information about a particular illness or circumstance (for example, osteoarthritis of the knee or breast cancer). They have a list of frequently asked questions about treatment, treatment options, and the answers to questions about those options. Currently these grids have only been used in the areas of physical healthcare and adult mental healthcare, but they have been shown to be effective in helping people become active participants in decisions about their care.

We are working to introduce Option Grid decision aids to child and adolescent mental health care in the UK. This autumn, the Tavistock and Portman NHS Trust in collaboration with the Anna Freud National Centre for Children and Families and Dartmouth is pioneering the development of Option Grid decision aids for a variety of child mental health difficulties and circumstances. It's being funded by the Health Foundation, which is an independent charity committed to bringing about better health and health care for people in the UK.

We are designing the grids in collaboration with young people, their families, clinicians and other professionals who are equipped with knowledge of the challenges children face and the kinds of decisions they have to make. These family- and child-friendly tools will be trialled in CAMHS in early 2017 and extensively evaluated and modified by a dedicated research team.

Option Grid decision aids are just one part of i-THRIVE, a larger project being run by the same team, aiming to improve mental health outcomes for children. For more information about i-THRIVE, you can visit their website here.

UK parents of children with depression have an exciting and opportunity to contribute to this project and to have a say about the treatment of depression. The project team have developed a Survey Monkey questionnaire that allows parents to give their opinions on the most important questions that come up when choosing care or treatment for depression, and we would love to hear your views.

If you are a parent of a child with depression in the United Kingdom, please help us ensure that this tool will be helpful to others and take this brief survey. You will also be able to enter into a prize draw for one of several £20 Amazon vouchers. You can find the Parent/Carer Treatment Preferences survey HERE.

Additionally, if your child (aged 11-18) has or has had depression and would be interested in filling out a survey, please email the research team and they will send you a link to the young person's survey. The first 25 young people to complete this survey will get a £5 Amazon voucher.