Pathway for 'difficult to vaccinate' children and adolescents empowers families and staff

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

The "Difficult to Vaccinate" initiative is part of the NSW Immunization Specialist Service (NSWISS), based at The Children's Hospital at Westmead, and was developed in collaboration with NCIRS in conjunction with NSW Health.

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

A recent 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 more efficient, successful service delivery and 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, minimizing 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 behaviors of patients, knowing what to do, when to stop and how to plan alternatives and employ clinical judgment in facilitating the sedation pathway."

One parent outlined their child's experience of having a significant fear of needles, which led to their 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, the child was able to have the vaccination without sedation and the procedure was done in 10 minutes.

The "Difficult to Vaccinate" model has informed the process of other similarly structured services such as the Quiet Pathway for COVID-19 Vaccination Clinic. NCIRS Immunization 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.

"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 immunization providers in the community (such as general practitioners) to share these experiences," Brogan said.

"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, and both pharmacological and non-pharmacological interventions."

It is hoped that findings from this study will be used 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 to, and equity in, these specialized services, leading to better protection in the community against vaccine-preventable diseases.