Synopsis of resource:
The study aimed to determine the usefulness of the HFWS in facilitating communication, prioritisation and problem-solving in clinics, from the perspectives of disabled children/young people and parent/carers. The tool aims to ensure that a range of health, wellbeing and functioning domains are discussed (aligning with ICF).
A sequential convenience sample of 60 families in Sunderland UK, who attended the clinic, completed a questionnaire. The two most common conditions were CP (32%) and ASD (18%). They all confirmed that all issues had been discussed, and serious concerns addressed. Around 95% found the tool easy to complete and good for gathering thoughts. Most participants found ranking useful and felt their needs were better addressed. <5% found it easier to verbalise than write concerns down. The HFWS is an aide-memoire for clinicians, facilitates advocacy and can be used across different settings.
The sample was small, in a single location and under one consultant.
Key learning outcomes
- The survey found that the communication support tool ‘Health, Functioning and Wellbeing Summary’ (HFWS) helped families to organise their thoughts before consultations.
- The families reported that the tool was easy to understand and it helped to improve communication during consultations.
- They felt that all of their serious concerns were addressed in clinic, and it was useful to rank their concerns.
- The majority of families felt their needs were better addressed when using the tool compared to not using it.
- Some families reported that it would be more useful if sent out in advance.
Authors
Dr Karen Horridge is a Disability Paediatrician in South Tyneside and Sunderland NHS Foundation Trust. She works with disabled children and young people aged 0-19 years and is an out-of-hours general paediatric consultant. She has over 30 years NHS experience and has written over 50 peer-reviewed publications. Her training has included paediatric neurology, adult palliative care, and general practice.
Her additional roles include:
- Chair, RCPCH Informatics for Quality Committee.
- Associate editor, DMCN.
- Co-director, Paediatric Disability Distance Learning Courses and Sheffield Hallam MSc.
- Clinical lead, Disability Matters, and Learning Disability Matters for Families.
