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Trial details imported from ClinicalTrials.gov

For full trial details, please see the original record at https://clinicaltrials.gov/study/NCT07136584




Registration number
NCT07136584
Ethics application status
Date submitted
7/08/2025
Date registered
22/08/2025
Date last updated
22/08/2025

Titles & IDs
Public title
SOS for Caregiver Wellbeing
Scientific title
SOS for Caregiver Wellbeing: Testing the Feasibility of a Screening, Outcomes and Support (SOS) Model for Parents and Caregivers of Children With Chronic Conditions
Secondary ID [1] 0 0
HREC116190
Universal Trial Number (UTN)
Trial acronym
SOS
Linked study record

Health condition
Health condition(s) or problem(s) studied:
Mental Health 0 0
Depression and Burden in Caregivers 0 0
Anxiety Depression 0 0
Stress 0 0
Caregiver Anxiety 0 0
Parent of Child With Chronic Life-threatening Illness 0 0
Condition category
Condition code
Mental Health 0 0 0 0
Depression
Mental Health 0 0 0 0
Anxiety

Intervention/exposure
Study type
Interventional
Description of intervention(s) / exposure
Other interventions - Screening, Outcomes and Referral Pathways

Other: Screening outcome - information resource sheet - Arm Description

* This is a single-arm prospective feasibility trial
* Every consenting caregiver is screened with a mental health screening questionnaire - the Depression, Anxiety, and Stress Scale (DASS-21)
* They will be provided feedback on their results
* Regardless of the results, all participants will be provided an information resource sheet will that provides descriptions of common mental health conditions, details on how to access psychology support services and links to existing online mental health resources.


Other interventions: Screening, Outcomes and Referral Pathways
All participants complete baseline screening with follow up at 3 and 6 months. A key feature of the study is that a standardised information resource sheet (to community-based services) is provided to all caregivers, regardless of their screening scores. Primary outcomes focus on implementation feasibility and acceptability, while secondary outcomes examine service uptake and longitudinal measurement of caregiver wellbeing.

This differs from existing research by providing resources universally rather than only to those scoring above clinical thresholds. Our longitudinal follow-up addresses an evidence gap identified in our systematic review - limited published data on downstream effects on actual service uptake and mental health outcomes over time. The services in the resource sheet also link to routine clinical care that doesn't require specialist support programs with dedicated funding.

Intervention code [1] 0 0
Other interventions
Comparator / control treatment
Control group

Outcomes
Primary outcome [1] 0 0
Acceptability of the overall SOS Model for caregivers
Timepoint [1] 0 0
Day 7
Primary outcome [2] 0 0
The proportion of eligible caregivers who provide informed consent and enrol in the trial
Timepoint [2] 0 0
Through study completion, an average of 6 months
Primary outcome [3] 0 0
The proportion of caregivers who report following up on a recommended service on the information resource sheet on the 3-month survey.
Timepoint [3] 0 0
3 months
Primary outcome [4] 0 0
The proportion of caregivers who report following up on a recommended service on the information resource sheet on the 6-month survey.
Timepoint [4] 0 0
6 months
Secondary outcome [1] 0 0
The proportion of caregivers reporting comfort (acceptability) when completing the mental health survey as measured on a Likert scale on a study-designed survey
Timepoint [1] 0 0
3 months
Secondary outcome [2] 0 0
The proportion of caregivers who would recommend to others completing a mental health and wellbeing survey (acceptability) as measured on a Likert scale on a study-designed survey
Timepoint [2] 0 0
3 months
Secondary outcome [3] 0 0
The proportion of caregivers reporting comfort (acceptability) when discussing their survey results with a clinician as measured on a Likert scale on a study-designed survey
Timepoint [3] 0 0
3 months
Secondary outcome [4] 0 0
The proportion of clinicians who report feeling their interactions were well-received in a survey on their experience as measured on a Likert scale on a study-designed survey
Timepoint [4] 0 0
4 weeks
Secondary outcome [5] 0 0
The proportion of clinicians who report feeling that caregivers understood the feedback results in a survey on their experience (acceptability) as measured on a Likert scale on a study-designed survey
Timepoint [5] 0 0
4 weeks
Secondary outcome [6] 0 0
The proportion of clinicians who report they found the process of discussing a caregiver's mental health easy (acceptability) in a study-designed measure in a survey on their experience
Timepoint [6] 0 0
4 weeks
Secondary outcome [7] 0 0
The proportion of clinicians who report they found the whole SOS model (screening, outcomes and support pathways) an acceptable addition to the clinic on a survey on their experience (acceptability)
Timepoint [7] 0 0
4 weeks
Secondary outcome [8] 0 0
The proportion of clinicians who consent to take part in the workshop and trial (feasibility of clinician recruitment)
Timepoint [8] 0 0
Through study completion, an average of 6 months
Secondary outcome [9] 0 0
The proportion of clinicians who respond that the SOS Model is feasible as per the 4-item Feasibility of Intervention Measure.
Timepoint [9] 0 0
4 weeks
Secondary outcome [10] 0 0
Time required for the clinician to discuss feedback and provide information as measured on a Likert scale on a study-designed survey (feasibility)
Timepoint [10] 0 0
4 weeks
Secondary outcome [11] 0 0
Clinician feedback on whether the mental health screening survey would add to their workload based on an open-ended question in a study designed survey (feasibility)
Timepoint [11] 0 0
4 weeks
Secondary outcome [12] 0 0
The proportion of consenting caregivers who complete all study procedures
Timepoint [12] 0 0
Baseline
Secondary outcome [13] 0 0
The proportion of consenting caregivers who complete all study procedures
Timepoint [13] 0 0
3 months
Secondary outcome [14] 0 0
The proportion of consenting caregivers who complete all study procedures
Timepoint [14] 0 0
6 months
Secondary outcome [15] 0 0
The proportion of caregivers who report receiving feedback from the clinician after completing the mental health and wellbeing survey
Timepoint [15] 0 0
3 months
Secondary outcome [16] 0 0
The proportion of caregivers who report being provided with an information resource sheet after completing their mental health and wellbeing survey (implementation fidelity)
Timepoint [16] 0 0
3 months
Secondary outcome [17] 0 0
The proportion of caregivers who report benefits from the referral recommendations as measured on a Likert scale on a study-designed survey
Timepoint [17] 0 0
3 months
Secondary outcome [18] 0 0
Barriers for caregivers to take up a recommended service as measured on a multiple response question on a study-designed survey
Timepoint [18] 0 0
3 months
Secondary outcome [19] 0 0
Changes in the mean total score between baseline and 6 months as measured on the Depression, Anxiety and Stress Scale - 21-item (DASS-21)
Timepoint [19] 0 0
Baseline, 6 months
Secondary outcome [20] 0 0
Changes in the mean total scores of caregivers between baseline and 3 months as measured on the EuroQol five-dimensional five-level version (EQ-5D-5L)
Timepoint [20] 0 0
Baseline, 3 months
Secondary outcome [21] 0 0
Changes in the mean total scores of caregivers between baseline and 6 months as measured on the EuroQol five-dimensional five-level version (EQ-5D-5L)
Timepoint [21] 0 0
baseline, 6 months
Secondary outcome [22] 0 0
Changes in the mean total score of the visual analogue scale on the EuroQol five-dimensional five-level version (EQ-5D-5L) of caregivers between baseline and 6 months
Timepoint [22] 0 0
baseline, 6 months
Secondary outcome [23] 0 0
The proportion of caregivers with mental health scores above the cut-off scores for the Depression, Anxiety and Stress Scale - 21-item (DASS-21) at baseline
Timepoint [23] 0 0
Baseline
Secondary outcome [24] 0 0
The proportion of caregivers with mental health scores above the cut off scores on the Depression, Anxiety and Stress Scale - 21-item (DASS-21) at 3 months.
Timepoint [24] 0 0
3 months
Secondary outcome [25] 0 0
The proportion of caregivers with mental health scores above clinical cut off scores on the Depression, Anxiety and Stress Scale - 21-item (DASS-21) at 6 months
Timepoint [25] 0 0
6 months
Secondary outcome [26] 0 0
The mean total score for caregivers on the Depression, Anxiety and Stress Scale - 21-item (DASS-21) at baseline.
Timepoint [26] 0 0
Baseline
Secondary outcome [27] 0 0
The mean total score for caregivers on the Depression, Anxiety and Stress Scale - 21-item (DASS-21) at 3 months
Timepoint [27] 0 0
3 months
Secondary outcome [28] 0 0
The mean total score for caregivers on the Depression, Anxiety and Stress Scale - 21-item (DASS-21) at 6 months
Timepoint [28] 0 0
6 months
Secondary outcome [29] 0 0
The mean total score for caregivers at baseline as measured by the EuroQol five-dimensional five-level version (EQ-5D-5L).
Timepoint [29] 0 0
baseline
Secondary outcome [30] 0 0
The mean total score for caregivers at 3 months as measured by the EuroQol five-dimensional five-level version (EQ-5D-5L).
Timepoint [30] 0 0
3 months
Secondary outcome [31] 0 0
The mean total score for caregivers at 6 months as measured by the EuroQol five-dimensional five-level version (EQ-5D-5L).
Timepoint [31] 0 0
6 months
Secondary outcome [32] 0 0
The mean total score for caregivers at baseline as measured on the visual analogue scale on the EuroQol five-dimensional five-level version (EQ-5D-5L).
Timepoint [32] 0 0
baseline
Secondary outcome [33] 0 0
The mean total score for caregivers at 3 months as measured on the visual analogue scale on the EuroQol five-dimensional five-level version (EQ-5D-5L).
Timepoint [33] 0 0
3 months
Secondary outcome [34] 0 0
Changes in the mean total score between baseline and 3 months as measured on the Depression, Anxiety and Stress Scale - 21-item (DASS-21).
Timepoint [34] 0 0
baseline, 3 months
Secondary outcome [35] 0 0
Changes in the mean total score of the visual analogue scale of the EuroQol five-dimensional five-level version (EQ-5D-5L) at baseline and 3 months.
Timepoint [35] 0 0
baseline, 3 months
Secondary outcome [36] 0 0
The mean total score for caregivers at 6 months as measured on the visual analogue scale on the EuroQol five-dimensional five-level version (EQ-5D-5L).
Timepoint [36] 0 0
6 months

Eligibility
Key inclusion criteria
* must be a parent of a child <18yo in an outpatient clinic at Royal Children's Hospital (in enrolled clinics either neuromuscular or diabetes)
* able to complete a consent form in English without an interpreter
Minimum age
No limit
Maximum age
No limit
Sex
Both males and females
Can healthy volunteers participate?
Yes
Key exclusion criteria
* need for an interpreter to complete informed consent

Study design
Purpose of the study
Other
Allocation to intervention
Not applicable
Procedure for enrolling a subject and allocating the treatment (allocation concealment procedures)
Methods used to generate the sequence in which subjects will be randomised (sequence generation)
Masking / blinding
Open (masking not used)
Who is / are masked / blinded?



Intervention assignment
Single group
Other design features
Phase
Not applicable
Type of endpoint/s
Statistical methods / analysis

Recruitment
Recruitment status
Not yet recruiting
Data analysis
Reason for early stopping/withdrawal
Other reasons
Date of first participant enrolment
Anticipated
Actual
Date of last participant enrolment
Anticipated
Actual
Date of last data collection
Anticipated
Actual
Sample size
Target
Accrual to date
Final
Recruitment in Australia
Recruitment state(s)
VIC
Recruitment hospital [1] 0 0
Outpatient clinics - Royal Children's Hospital - Parkville
Recruitment postcode(s) [1] 0 0
3052 - Parkville

Funding & Sponsors
Primary sponsor type
Other
Name
Murdoch Childrens Research Institute
Address
Country
Other collaborator category [1] 0 0
Other
Name [1] 0 0
National Health and Medical Research Council, Australia
Address [1] 0 0
Country [1] 0 0
Other collaborator category [2] 0 0
Other
Name [2] 0 0
University of Melbourne
Address [2] 0 0
Country [2] 0 0
Other collaborator category [3] 0 0
Other
Name [3] 0 0
Royal Children's Hospital
Address [3] 0 0
Country [3] 0 0

Ethics approval
Ethics application status

Summary
Brief summary
Trial website
Trial related presentations / publications
Public notes

Contacts
Principal investigator
Name 0 0
Nadia Coscini, BA, MBBS, MSc
Address 0 0
Murdoch Children's Research Institute & University of Melbourne
Country 0 0
Phone 0 0
Fax 0 0
Email 0 0
Contact person for public queries
Name 0 0
Nadia Coscini, BA, MBBS, MSc
Address 0 0
Country 0 0
Phone 0 0
+61 3 8341 6762
Fax 0 0
Email 0 0
Contact person for scientific queries

Data sharing statement
Will individual participant data (IPD) for this trial be available (including data dictionaries)?
Yes
What data in particular will be shared?
Individual Participant Data (IPD) will be shared with other researchers. The specific information that will be made available includes the study protocol, statistical analysis plan, informed consent form templates, and the final report containing de-identified participant data summarised in tables and figures.

Supporting document/s available: Study protocol, Statistical analysis plan (SAP), Informed consent form (ICF), Clinical study report (CSR), Analytic code
When will data be available (start and end dates)?
Beginning 12 months following analysis and article publication (aim August 2028), the following will be made available long-term for use by future researchers from a recognised research institution whose proposed use of the data has been ethically reviewed and approved by an independent committee and who accept Murdoch Children's Research Institute's (MCRI) conditions for access:

* Study protocol, Participant Information and Consent Forms (PICF), surveys
* Individual participant data that underlie the results reported in this article after de-identification (text, tables, figures, and appendices)
Available to whom?
Researchers from a recognised research institution whose proposed use of the data has been ethically reviewed and approved by an independent committee and who accept MCRI's conditions for access:

* Study protocol, PICF, surveys
* Individual participant data that underlie the results reported in this article after de-identification (text, tables, figures, and appendices)
Available for what types of analyses?
How or where can data be obtained?
IPD available at link: https://metis.melbournechildrens.com/


What supporting documents are/will be available?

No Supporting Document Provided


Results publications and other study-related documents

No documents have been uploaded by study researchers.