This project is part of the Health Foundation’s Innovating for Improvement programme. The Health Foundation is an independent charity committed to bringing about better health and health care for people in the UK.
Shared decision making is a key feature of the THRIVE conceptual framework and was highlighted as a priority for child and adolescent mental health in the Department of Health/NHS England Taskforce report Future in Mind. However, implementation of shared decision making within a CAMHS setting remains problematic with barriers including training, medical culture, concern about time required and feared loss of practitioner autonomy. While many clinicians believe they are already participating in shared decision making with clients, a rapid internal audit of CYP IAPT CAMHS service users in 2015 indicated that only 30% of young people felt that they were given enough information at assessment to make a choice about the treatment they received.
Camden have implemented shared decision making as part of their assessment appointment clinics, and this work fed directly into the development of the THRIVE conceptual framework. However, there is still variability in patient experience of shared decision making in Camden. Evidence shows that using tools designed to support the shared decision making process can improve shared decision making in practice.
In this project, the Tavistock and Portman NHS Foundation Trust, the Anna Freud National Centre for Children and Families and the Dartmouth Institute for Health Policy and Clinical Practice developed and translated six new Option Grids™, a shared decision making tool, to support children and young people at key decision points along their CAMHS journey.
Option Grid™ decision aids are a trademarked shared decision making tools that have been proved to help patients and health providers compare alternative treatment options with clinical equipoise. For more information please see optiongrid.org. We have adapted Dartmouth’s rigorous process for producing Option Grids™ to create our young person-friendly i-THRIVE Grids.
As part of the project, six i-THRIVE Grids have been developed and piloted in two assessment clinics in Camden. This followed rigorous baseline data collection from November 2016 to February 2017 during which shared decision making and experience of service were measured within the clinics.
The grids were developed from June 2016 to February 2017 with extensive input from young people, service users, parents, clinical experts, and other professionals with knowledge of young people’s mental health. The grids are separated by support for particular presenting difficulties that is either available inside or outside of the NHS. Two of the grids address support for low mood/depression, two address support for difficulties sitting still or concentrating/ADHD and two address support for self-harm.
As a result of this quality improvement project, it was anticipated that experience of care and patient involvement would be improved, more patients would be signposted to a wider range of providers and intervention types, and more children and young people would engage in self-help.
Measurement of this was achieved with the help of a variety of evaluation tools including psychometric symptomatology scales (see below). There was also a large qualitative component of this project.
- A shared decision making measure (CollaboRATE, Barr et al., 2014)
- A service satisfaction measure — Commission for Health Improvement Evaluation of Service Questionnaire (CHI ESQ, Attride-Stirling., 2002) (some qualitative elements)
- A behavioural problem screening measure – the Strengths and Difficulties Questionnaire (SDQ, Goodman., 2001)
- A measure for assessing anxiety and depressive disorder – the Revised Child Anxiety and Depression Scales (RCADS, Weiss & Chorpita., 2011)
- Interviews and focus groups with service users and clinicians
- Feedback from PDSA cycles at the clinics (Plan Do Study Act, a quality improvement method)Follow-up data was collected from March to August 2017 at the two CAMHS assessment clinics. Of 67 young people seen for assessment, 10 used the i-THRIVE grids.
Baseline data was collected via CollaboRATE. Data was collected from 33 parents and 22 young people who attended one of two assessment clinics in Camden from November 2016 to March 2017. The overall mean of the CollaboRATE score (ranging from one being the lowest and nine being the highest) was 8.15 for parents and 7.60 for young people. Also calculated was the “Top Score” percentage which was the proportion of participants who gave a perfect score (nine on all questions) to the total number of participants. For the “Top Score,” 39% of parents gave perfect shared decision making scores while only 14% of young people gave a perfect score.
Five PDSA (Plan Do Study Act) cycles were completed during the evaluation period. This allowed for the measurement and understanding of incremental change in grid usage over time. It was found that clinicians used the grids more after:
- Baseline feedback and training were given
- Diagnoses (e.g. “depression”) on the grids were replaced with symptom-specific descriptions (e.g. “low mood”)
- Further training on i-THRIVE grids was provided
- Text changes relating to reading age were added
- A ‘You said, we did, poster’ was introduced to both clinics detailing the rationale behind changes made to the grids
A significant difference was found in parent-reported experience of care with those who had used i-THRIVE grids reporting better care than those who had not used the grids. However, no significant difference was found on parent or young person shared decision making, young person experience of care, or modality of intervention received. Ceiling effects of baseline measures and screening prior to assessment could account for this. This is also a very small sample.
Semi-structured interviews were conducted with five clinicians and one parent who had used the grid.
The i-THRIVE grids reminded clinicians of all of the available options and facilitated discussion around treatment – “The parents came with a view of one kind of medication … But with the grid, we were able to have quite a bit of conversation about the different types of medication”. Clinicians found that parents and service users were keen to use the grids and found them helpful – “I think what I was struck by is that the family specifically requested for more grids. The dad wanted a grid, and I thought that was indicative that it was something that they thought was a useful component of the conversation that we had”. Clinicians also commented that the grids could be useful in other settings, such as A&E (the self-harm grids in particular) and schools.
Parents felt that the grids were empowering in helping them understand options and make decisions – “[The grid] gives you more… you can go into the meetings, the appointment armed with some knowledge.” The grids appeared to promote parents’ agency by allowing them to choose the right decision for their family – “In fact, I felt my partner and I were allowed to take ownership of the decision.”
Following on from the conclusion of the pilot phase in Camden, the North East London Foundation Trust (NELFT) will be pioneering the use of the grids in their services. Two additional grids for anxiety are in development and will be available for use by December 2017. NELFT sites will have the opportunity to aid in the refinement of these grids as well as to have service-specific data around shared decision making and experience of care evaluated by our research team.
- Theory and behaviour change techniques (BCTs) for SDM interventions in child and youth mental health
- Understanding the most important treatment FAQs for young people with ADHD
Contact the project team
To find out more about the i-THRIVE Grids project please contact Rosa Town, i-THRIVE Grids Research Assistant at firstname.lastname@example.org.