Exploring the experience of service users following attendance at a student-led interprofessional neurodevelopmental clinic

Figures & data

Table 1. Description of the assessment process.

Components	Process
1. Intake	A comprehensive intake with the service user, liaison with child protection services (if the patient was in care of the state), health care providers and other stakeholders, and detailed review of all available medical, developmental, and educational records. This included collection of history of prenatal history (i.e., prenatal alcohol and other exposures) and postnatal adverse events.
2. Holistic therapeutic assessment	Individualised service user goal setting using developmentally appropriate tools (e.g., Adolescent Goal Setting tools, CAPE/PAC or purpose-built card sorting tasks for younger children). Assessment of neurodevelopmental domains as per Australian Guide. This included a combination of standardised direct and indirect assessment tools and structured clinical observations of functional activities, individualised to service user developmental age, needs and interests. Assessment of sleep, eating, sensory needs, and physical health to provide a comprehensive understanding of the child. Medical assessment key FASD physical features (i.e., growth deficiency; dysmorphology), assessment of physical health and genetic testing. Various sensory and behavioural support strategies were trialled, tested, with feedback, and individualised resources provided. Occurred over three days, once per week (approximately 10am–2pm). With support from clinic supervisors, students worked together in interprofessional pairs to plan and deliver the assessment using a family-centred approach. An individualised assessment plan was developed for each service user for each day of the assessment.
3. Case conference	Interprofessional case conference (approximately one hour per child/adolescent) with all staff and students.
4. Feedback	Individual child/adolescent strengths-based feedback session. Individualised resources were created for each child/adolescent. Service user feedback session, which provided an overview of the assessment results and individualised resources and supports. Other key stakeholder feedback session (e.g., child safety, school). Provision of two comprehensive reports. One strengths-based family report and one report to support access to the NDIS.

CAPE: Children’s Assessment of Participation and Enjoyment; PAC: Preferences for Activities of Children; NDIS: National Disability Insurance Scheme (i.e., the mechanism in Australia whereby individuals with disabilities can access a range of individualised supports).

Table 2. Demographic characteristics of service users.

P No.	Gender	Relationship to child	Caregiver ethnicity	Child age	Child gender	Child ethnicity	Primary diagnostic outcome
1	Female	Case manager	Caucasian	13	Male	Caucasian	FASD with <3 sentinel facial features
2	Female	Step-grandparent	Caucasian	10	Female	Caucasian	ADHD
3	Female	Grandparent	Caucasian	15	Female	Caucasian	FASD with <3 sentinel facial features
4	Female	Grandparent	Caucasia	7	Male	Caucasian	ADHD
5	Female	Foster carer	Caucasian	15	Male	Aboriginal	FASD with <3 sentinel facial features
6	Female	Foster carer	Caucasian	10	Female	Aboriginal	FASD with <3 sentinel facial features
7	Male	Youth worker	Caucasian	12	Female	Caucasian	Intellectual Disability
8	Female	Adoptive parent	Caucasian	9	Female	Caucasian	FASD with <3 sentinel facial features
9	Female	Biological parent	Caucasian	13	Female	Caucasian	FASD with <3 sentinel facial features
10	Female	Stepparent	Caucasian	14	Male	Caucasian	FASD with <3 sentinel facial features

FASD: Fetal Alcohol Spectrum Disorder; ADHD: Attention Deficit-Hyperactivity Disorder; P: participant.

Table 3. Themes (bolded), sub-themes, and example quotations.

Theme	Example Quotations
Clinic attendance seen as a positive event	“It was a much warmer a process than what I was expecting. It was a much friendlier process… The whole thing was great. It really worked out very well. It was easy to schedule around work” (P9).
Positive, responsive, gentle, interactions with staff/students	“Everything was really well done. From my side, everyone was really friendly, which is what you want in that circumstance. I want my child to feel safe and be able to get the most out of doing this so it can produce the best results at the end of it. I really felt that that staff really do that, because they do go that step further to really make sure that they [child] feel comfortable” (P10).
Family centred/developmentally appropriate care memorable for children	“I think that a lot of that empowerment has come from [student name]. They haven’t made her feel like she has a disability, they made her feel like this is you and you can rock it” (P9).
Assessment process appreciated when thorough and comprehensive	“The experience was very good, very accurate, and very attentive, they knew what they were doing, there was little confusion between what was happening…the reporting and the questioning was done very thoroughly and covered a lot of stuff and they listened and understood what I was explaining” (P5).
Feedback, reports, and resources were helpful	“The reporting at the end of the assessment was extremely thorough and in a level of being easily understood. It was written to meet both medical and lay person needs as well as NDIS etc. so I think it was very extensive the reports that they had done. They put all the assessments in one document, which is really important because you have several assessments over so many different disciplines and they’re all thorough documents whereas now it is one document that gives a complete picture so that was very important to be able to now have” (P5).
Validation, clarification, and relief, but also challenges post-assessment	“The few problems that were identified and the potential ways of dealing with it, whilst they might be small things, in our family they make a big impact” (P10).
Diagnostic clarification provided direction for future	“You get no support not knowing, that’s what we find. Not knowing, you don’t get any support…so, it just helps everybody to have that better understanding” (P6).
Redefined expectations of child and child’s capacity	“Yes, flexibility is key I think if you have a child with FASD. They’re not going to be able to do things the way my older sons have… [Child name] is going to be different. I have to take the blinkers off with her and think outside the square. Luckily, I have been able to do that” (P9).
Validation as a neutraliser of service user discomfort	“…they [staff/students] were really supportive of [child name], they were really supportive of me, especially in the last session, I think it was [student name] that I sat with…The student was really supporting and saying that it was ok to feel the way I was… The student reassured me that it is ok and that a lot of people are in the same boat. And even to hear that has given me a whole new, it is ok, I am not the only one feeling this” (P8).
Sense of relief experienced from diagnostic outcome	“Well like I said we have known for a long time that there is something there. One psychologist did suggest that it was FASD or Autism. But the paediatrician did not want to acknowledge that at the time. That was about four years ago. To finally get a diagnosis and a better understanding was a relief. It was peace of mind. For everybody.” (P6)
Permanency of diagnosis and future implications	“Because of the permanency, and the intellectual disability diagnosis, it’s that permanency, it’s sort of like…a level of hopelessness that you feel” (P5).
Need for further support and importance of advocacy	“If you were to ask me three years ago before we got a diagnosis for the boys, I would have. I was waiting for someone to fix it, but in that time, I learned that I am the only one who can fix it and I am the only one who can advocate. You know training and education is what people need” (P4).
Persistent behavioural challenges, tricky to manage in current support climate	“But on the weekend if you let the ropes go a little bit, we have a doorway that has holes after a few meltdowns, so we are sort of at a bit of a crisis point at the moment with all of the kids so yeah, it’s a bit of a challenge at the moment” (P5).
Parent/caregiver burnout difficult to avoid	“For us, I felt like we went to the brink of being stretched as a family and what we could cope with” (P10).
	“It has taken so long to get this far and then you think things are going ahead and then you re two steps backward and you have to wait and wait and wait” (P1).
Numerous services accessed, little help	“We have been to so many different places and they were like you don’t know what you’re talking about, you’re not a professional, and you just walk out of there thinking well that was a bloody waste of time” (P1).
Service users more likely to get other children assessed following attendance	“Now we want to get our 16-year-old daughter assessments” (P6).
Drawing on lived experience for future service improvements.	“Even some counselling from someone who knows. Not from a counsellor who hasn’t been through it. But someone who has been through it and has sat where I have sat. That’s something we want more than anything” (P9).