Goal setting the things that matter to children with disabilities

Goal Setting

Goal setting is a key directive in professional codes of practice, especially in chronic childhood neurodisabling conditions. It is also a common element in many children’s services. However, that’s not to say that it is easy and the number of tutorials, lectures, papers and textbooks are testament to the challenges that clinicians face.

Paris LogoSearching through the archive of last years’ 31st EACD meeting in Paris and the previous 30th EACD meeting in Georgia 2018 it is easy to find informative poster and oral presentations about goal setting. A particularly interesting presentation "Parents and professionals: we are in the same boat, but can we row in the same direction?" was delivered by Dr Alain Chatelin who challenged professionals to listen to parents and children with disabilities in order to come to a shared understanding of goals.

Family-stress theory is highlighted in a poster presentation "Readiness Support: Improving attendance and engagement in children’s rehabilitation" by Dr Michelle Phoenix who helps us to understand why some families find it difficult to engage in therapy, never mind set goals with us.

Goal SettingIn 2015 two books on goal setting were published: "Goal Setting and Motivation in Therapy: Engaging Children and Parents" by Anne A. Poulsen, Jenny Ziviani and Monica Cuskelly AND "Rehabilitation Goal Setting.Theory, Practice and Evidence" by Richard J. Siegert and William M. M. Levack. Both of these books are interestingly aligned to the idea that such textbooks should have three components to learning about goal setting.  You should know some theory of goal setting including some insights into motivation, engaging children and families, advocacy, competence; that you should consider the evidence for goal setting; and that there are practical tips that will guide how you go about using goal setting in your practice.

How to improve your goal setting for children with disabilities?

We need to appreciate that it’s not an easy process but there’s plenty of help out there.
Here’s our 5 Tips to improve your goal setting practice

1. Set goals collaboratively

Family-centred and child-centred care is a challenge to some who continue to deliver an ‘expert’ model of practice.  It is essential that professionals and families plan together as equals to formulate goals and get a family-centred system going "Parents and professionals: we are in the same boat, but can we row in the same direction?"

Take a strengths-based approach to emphasise child and family strengths and ability to manage their own situations.  Seek out opportunities to develop your own listening, communicating and coaching skills.

2. Set goals across all domains of ICF

Watch Professor Peter Rosenbaum’s La Fondation Paralysie Cérébrale Award Lecture "How our thinking is changing in 21st century"  from our archive for an introduction to the World Health Organisation International Classification of Functioning and Health (ICF) and a parallel version of F-words (Fitness, Function, Friends, Family, Fun and Future) that ‘make real’ the ICF concepts.

3. Rate goals

Goal Attainment Scaling (GAS) is an established method of rating goal achievement. Whether a young person achieves the goal as predicted, a bit/lot more or a bit/lot less can be rated if the different levels have been established at the goal setting stage. Successful goal setting using GAS is partly dependent on the ability of the clinician to predict how achievable a goal is – this takes practice!

COPMCanadian Occupational Performance Measure (COPM) is a tool that allows family to rate not only current function, they are also able to rate how important goals are to them, and how satisfied they are.  A scale of 1-10 is used to rate goals before and after an intervention addressing the important areas of the child/young person and family’s life.

Children with disabilities might need a bit of support to get involved in the setting, prioritising and rating. You can use simple supports such as sets of photos/images and star/smiley face rating to aid communication.  More formal resources such as TalkingMats© or Perceived Efficacy and Goal Setting (PEGS) system can also be sourced.

4. Monitor and adjust goals

In order to keep goals live and relevant it is good to monitor them with the child/young person and family as you’re going along. You can do this at meetings and in clinical sessions by referring to them and asking informally for some feedback.  Check to see if everyone is on track. There are also more formal ways of tracking and monitoring goals.

During our EACD Paris meeting Dr Gary Bedell delivered a poster presentation "Social Participation And Navigation (SPAN): Description and usability testing of new web site and application for adolescents and young adults with acquired brain injuries" describing Social Participation And Navigation (SPAN), an App that supports goal setting and tracking. Young people are matched with college students who support them with coaching.

Another recent technology innovation is a goal tracking system called Goal Manager. This application helps children and families to work with a multidisciplinary team to keep track of goals and actions, send reminders, and monitor progress towards goals.

5. Review goals

We are all familiar with clinical standards that mandate the evaluation of our interventions as part of the treatment process with individual clients. Reviewing and scoring goals, such as GAS and COPM, is a perfect way of doing this.

Within my immediate network I have seen the benefit of evaluating goals across cohorts of children with disabilities. Colleagues have used the ICF frameworks and sometimes the linking rules [Cieza A.] to review goals and frame their results [McCarron R.H.], [Kelly G.]. Service evaluation projects like these can make a meaningful contribution to the identification of need, and prioritise commissioning for children with disabilities.

Follow these few simple steps to improve collaborative goal setting that targets what is important to children with disabilities.  

Lorna WalesBlog by Dr Lorna Wales