Recruitment

Staff involved in the care of CMC and parents or guardians of CMC were recruited during the period April to July 2022. Printed advertising materials about the project were displayed in HNELHD health facilities, schools and early childhood education and care centres. The project was also promoted on local community organisation and hospital social media channels. Additionally, health staff were directly informed about the study and provided with both printed and digital materials to share with colleagues and patients. Interested individuals were instructed to register their interest in participating, enabling self-referral for potential health staff, parent/guardian, and child/young person participants. A purposive sample was then selected from this list. Eligible health staff participants worked within HNELHD and were involved in the care of CMC. Likewise, parent/guardian participants were eligible if they were the primary caregivers of CMC receiving care in HNELHD. Child/young person participants, aged 7–17 years, with medical complexity and receiving care in HNELHD, were also eligible.

To select participants, the project team conducted brief screening phone calls using predefined questions outlined in Table 1. These questions, tailored for staff, gathered details regarding their engagement with CMC, workplace, responsibilities, and experience. Similarly, questions for parents/guardians and children/young people aimed to ensure a diverse representation from both rural and metropolitan areas, covering various medical conditions. For eligibility purposes, age was asked during screening for child/young person participants only.

Participant screening questions

1. Do you work with medically complex children?

2. Where do you work?

3. What is your role?

4. How many years experience do you have in this role and similar roles?

1. What is your/your child’s diagnosis?

2. What specialty teams/care do you/your child access?

3. Where do you/your child live?

4. What is your/your child’s age*

Screening questions asked of potential healthcare staff, parent/guardian and child/young person participants to ensure a purposive sample for interview

* Only the age of the child was requested

Following screening, ten parents/guardians of CMC, one CMC and 21 health professionals who work with or manage CMC were selected to participate. 60% of interviewed participants resided or worked within metropolitan settings and 40% in rural/regional settings. All sectors of the district and major facilities were represented. We did not record details on gender or years of experience.

One participant withdrew from the study prior to being interviewed due to illness. Unfortunately, this was the only CMC participant and no further children/young people were recruited. This was due to the young age of the child, parent preference for participating without their child present and healthcare issues that limited the ability of the child to participate in an interview.

Further detail of participant characteristics can be found in Tables 2 and ​and33.

Parent/guardian and child/young person participant characteristics

Neurology, Gastrology,

General paediatrics

Neurology, Gastrology,

General paediatrics

Neurology, Oncology,

General paediatrics

Neurology, Orthopaedics,

General paediatrics

Characteristics of the 10 parent/guardian participants, including their role within the family unit, the residential location of their child, and the tertiary specialty teams involved in their child’s care

* The Rural, Remote and Metropolitan Area (RRMA) classification divides Australia metropolitan, rural and remote zones [15]

Health professional characteristics

Characteristics of the 21 health staff participants, including their professional role and workplace location

* The Rural, Remote and Metropolitan Area (RRMA) classification divides Australia metropolitan, rural and remote zones [15]

Participants received information sheets outlining the project’s objectives, participation requirements, associated risks, and benefits. Tailored versions were prepared for healthcare professionals, parent/guardians, and children aged 7–13 and 14–17. Written consent was obtained from all participants before conducting interviews.