Because of advancements in both medical and nursing care, children who were previously expected to die in infancy are now surviving, thriving, and living in the community—though with complex medical and healthcare needs. The number of children and young people with complex medical needs is expected to continue to rise, while many transition into adult services.
There is no international consensus on the term to use for children with complex medical needs. A commonly used definition in literature is children with medical complexity—defined as those with significant healthcare usage, functional limitations which may require technology dependence to sustain a “basic quality of life,” substantial family-identified service need with significant impact on the family, and either diagnosed or suspected chronic condition.
My role
To meet the demand of this new population, Irish Health Service Executive published a document in 2014, which was a review into current practices for the care of children with complex healthcare needs in the community. In 2017, a new framework was devised nationally for funding and processes for this population of children. New policies, pathways, structures, and roles needed to be created to ensure safe quality care was provided. I completed my master’s degree in nursing, and I wanted to gain an insight into the challenges that nurses’ face in the family home caring for children with complex healthcare needs. I used a mixed methodology of both questionnaires and focus groups. One of the overwhelming recommendations from my research was the need for education and training, which we know is vital to ensure nurses are competent and confident in providing care in the home setting. This would then help build a trusting relationship with the families we were working with.
Following the commencement of the framework for children with complex care needs, the findings from my master’s, and several discussions with my line manager, a bespoke role was created: Clinical Practice Specialist.
This role incorporated facilitating training and education, practice development, and nurse specialist. I wanted the role to support nursing teams, but also children living in the community with complex medical needs. The role incorporated further training and education for nurses, as well as practice development to ensure policies and procedures were up to date and were based on best practices. I implemented processes to support nurses in their clinical practice and ongoing development with skills books to maintain a record of their own competence and their own development needs. With my clinical expertise and knowledge, supporting the most complex clients and their teams were identified as part of the role.
The role took approximately nine months to come to fruition. It included identifying any other similar roles that were in place and obtaining a copy of their job description. There was no other standalone job like this one, and I had to obtain job descriptions from clinical practice specialists, nurse educators, and facilitators. Practice development coordinator roles are not in Ireland, and so I reviewed job descriptions from the United Kingdom. I also spoke to people in external roles, such as public health nurses and acute healthcare teams, about home care in the community. I rewrote the job description several times to ensure it encompassed the initial highlighted pieces.
Because this role was new, I spent a large amount of time networking to ensure other professionals knew my name and determine appropriate contacts for questions about training or complex discharges. I also spent a lot of time connecting with the Irish Nursing Board because I wanted the training that I would be providing to be approved for professional development credits.
The main impact of my role is the retention of nurses and the confidence of the team delivering care to children with very complex medical needs in the community. Having confident and competent nurses delivering safe quality nursing care creates and builds a trusting relationship between the nursing teams and families, which benefits the children and ensures they can live at home.
Nurse tutor
Prior to beginning my role, I was an instructor for a small number of skills, such as tracheostomy care and ventilator education. But as the role evolved, I began a postgraduate course in clinical health science education. After successfully completing the course, I was able to register as a nurse tutor with the Nursing and Midwifery Board of Ireland.
As a registered nurse tutor, my role was to facilitate education sessions. All the sessions that I facilitated were for nurses across the spectrum, from novice to expert. A few were new into the community area of work, and some were expert practitioners who requested a refresher to update their skills. I devised each session and ensured they have been approved by the Nursing and Midwifery Board of Ireland. Each module varies from 0.5 to 35 continuing education units and is aimed specifically towards caring for children with complex healthcare needs in the community.
The movement of nurses internationally has also seen an increase of overseas trained nurses applying for registration in Ireland. To support overseas trained nurses, I devised a seven-day course to help them through the exams to obtain their Irish registration and begin working in the homecare environment.
Practice development
The practice development part of my role continues to grow as the role of nurses in homecare grows. A suite of policies and guidelines are available for the nursing team, and I revise the clinical ones as required (i.e., a change in international or national guidance of best practice every two years from the date of previous revision).
I am the chair of the quality and safety committee, too, and I implement or devise plans for recommendations from the committee. Most recently, I reviewed The Life and Death of Elizabeth Dixon Report and implemented recommendations. I have also implemented skills books for the nurses to have evidence of their current skills and what is available to them to upskill.
Nurse specialist
Children with complex healthcare needs account for a very small number of children in any country. To help support the children and young people, their families, and the nursing team, I facilitate a joint visit for us and the nurse manager. For families who are homebound, consumables and devices can change often without their knowledge. I ensure families are getting up-to-date information or access to a trial of a newer product, such as a dressing or suction machine. I support the nurse managers to write person-centered care plans to ensure good quality safe care is provided. I play a role in ensuring risk assessments for schools are completed and plans are devised to enable children to access the education center of their choosing.
As my colleagues become clinical experts, my support is needed less often. By implementing ongoing education, we are retaining more staff and do not have to train as frequently. This has allowed me to begin analyzing nursing metrics as part of a clinical audit programme this year and help devise clinical skills books to support nurses in the community. My role continues to evolve and broaden, and over time, each part has been more significant or busier than previous roles as advancements in medicine continue to flow and ebb.
Cora O’Leary is a Clinical Practice Specialist at Resilience Care in Cork, Ireland. She is a member of Sigma’s Omega Epsilon at-Large Chapter.