The SHANARRI wellbeing indicators are : Safe, Healthy, Achieving, Nurtured, Active, Respected, Responsible, and Included. They provide a framework for assessing and supporting children and young peoples wellbeing.
Children and young people with PANS or PANDAS can be significantly impacted across all 8 well being indicators - the table below gives an overview of what that might look like.
The SHANARRI Indicators
There are multiple factors associated with PANS and PANDAS which can impact on a child’s safety, most notably Intrusive thoughts, OCD, Tics, Eating restrictions, and Self-injurious behaviour. The lack of understanding about the conditions from family and friends and scepticism from professionals can also impact of feelings of safety.
SAFE
HEALTHY
All PANS and PANDAS symptoms impact a child’s or young person's health, but some cause more challenges than others, such as anxiety, eating issues, headache, OCD, pain, seizures, sleep issues, and tics.
It is important to remember that PANS and PANDAS are medical conditions, and the priority in supporting the health of a child with symptoms of PANS or PANDAS is diagnosis and treatment.
ACHIEVING
PANS and PANDAS can have a significant impact on a child or young person’s ability to attend school or engage in learning. This can be down to OCD, fatigue, sleep issues, cognitive issues, anxiety, demand avoidance or a combination of all of these and many other symptoms and factors. Those affected need understanding and flexible support.
NURTURED
The lack of knowledge and understanding of PANS and PANDAS, and the symptoms themselves can significantly impact a child’s feelings of being nurtured. This is exacerbated by the fact that many families find themselves in a battle for healthcare and education support, adding to the trauma of an already extremely challenging situation.
ACTIVE
It is common for children with PANS or PANDAS to withdraw from activities which they previously enjoyed. Many have pain, fatigue, and dizziness meaning that it would not be advisable for them to do anything too strenuous. Children need to be supported to find activities which they will enjoy which will suit their circumstances.
RESPECTED
The lack of knowledge and understanding of PANS and PANDAS, along with past scepticism of the conditions can lead to disagreements and misunderstandings with professionals. This can lead to children feeling that they are not being listened to or believed.
It is vital that all those working with a child with PANS or PANDAS have a good understanding of the conditions, and crisis plans are in place that respect the child.
RESPONSIBLE
Children with PANS and PANDAS often have compulsive behaviour which they cannot control, and they should not be held responsible for that behaviour. Many also have symptoms of demand avoidance, making offering the opportunity to demonstrate responsibility a challenge, and it needs to be done flexibly and at the right level for the child.
INCLUDED
Many of the symptoms and circumstances around PANS and PANDAS lead to both children and their families becoming socially withdrawn. Children may withdraw in school due to stigmatisation, and many parents have to give up work to look after their child, and face financial hardship, meaning they may also struggle to afford small luxuries like days out.
