For almost 100 families, the ‘Difficult to Vaccinate’ clinical pathway has transformed their child’s immunisation journey from one that is challenging, to one that can empower.  

The ‘Difficult to Vaccinate’ clinical pathway is part of the NSW Immunisation Specialist Service. NSWISS is based at The Children’s Hospital at Westmead (CHW) and was developed in collaboration with the National Centre for Immunisation Research and Surveillance (NCIRS), in conjunction with NSW Health.  

It facilitates a range of vaccination service for children and adolescents with significant needle phobia and those who need complex care. Many of these children have comorbid intellectual or developmental disability, experience multiple hospital presentations, and are not up to date with immunizations. 

A study, published in the Paediatric and Neonatal Pain journal, investigated the outcomes of using parental and staff feedback to develop and evaluate the service of the ‘Difficult to Vaccinate’ clinical pathway. It demonstrated that the implementation of actionable strategies from this feedback resulted in efficient and successful service delivery, with improved patient outcomes. 

"Through interviewing patient families and staff about their experiences, we were able to paint a picture of the service’s gaps and what areas could be improved,” Dr Natalie Ong, Senior Staff Specialist at CHW Child Development Unit and Study Lead, said. 

“Team members incorporated this feedback to further develop the service ensuring the adapted clinical pathway truly met the needs of the patient population and boosted staff self-agency.” 

The Pathway facilitates the administration of vaccines in an environment tailored to each individual, guided by the child and their family on how they need to be supported. This could include relaxation and distraction techniques such as adjusting lighting, minimising noise, playing music, using fidget toys, or enlisting the help of sedation. 

“Families reported having more autonomy over their child’s care and were supplied with better information, strategies, and support mechanisms that were specific to their child’s needs. This positive and relieving experience was empowering for families, increasing their likelihood of returning for further vaccinations and hospital procedures,” Dr Ong said. 

"Staff grew in confidence to interact with and manage challenging behaviours of patients, knowing what to do, when to stop, plan alternatives, and clinical judgement of facilitating the sedation pathway.” 

One parent outlined their child’s experience of having a significant fear of needles, leading to them missing vaccinations and being resistant during medical procedures. They turned to the ‘Difficult to Vaccinate’ pathway and used the option of sedation for their first few visits. On their last one, thechild was able to have the vaccination without sedation and the procedure was done in 10 minutes. 

"I was so proud of [them] as we have had a journey to get him to this point. I am so thankful for the staff at CHW in assisting [them] where it looks like [they] are over [their] fear of needles. I tell everyone how fantastic the whole process was!” 

Findings of the study are hoped to help further establish and develop clinical care pathways to facilitate vaccinations for patients with significant needle fear across the state. This would mean improved access and equity to these specialised services, leading to better protection in the community against vaccine-prevent diseases. 

The ‘Difficult to Vaccinate’ model has informed the process of other similarly structured services such as the Quiet Pathway for COVID-19 Vaccination Clinic. Immunisation Clinical Nurse Consultant, Deidre Brogan was involved in training staff and shared her knowledge and resources for the clinic, as well as assisting the triage of referrals and appointment planning. 

“The NSWISS has collaborated with providers such as Blacktown Hospital, Concord Repatriation General Hospital Disability and Rehabilitation Team For Young People, various community disability services, and immunisation providers in the community (such as general practitioners). We have also worked with NSW Health to share resources and provide expert advice to inform vaccination activities, risk assessment, patient triage and treatment options both pharmacological and non-pharmacological interventions,” Deidre said. 

The Specialist Immunisation Clinic offers two clinics at CHW. The Assisted Vaccination clinic is held on Thursdays in the Clinical Research Centre, while the Adverse Events Clinic for high-risk patients is held on Fridays in the Bandaged Bear Outpatients Clinic.  

The Sydney Children's Hospital, Randwick, also offers immunisation services through its Outpatient Department.