SOS for Caregiver Wellbeing

SOS for Caregiver Wellbeing: Testing the Feasibility of a Screening, Outcomes and Support (SOS) Model for Parents and Caregivers of Children With Chronic Conditions

Parents and caregivers of children who have a chronic condition carry a large care burden and are at higher risk of having mental health symptoms. This study aims to see if completion of a mental health questionnaire by parents / caregivers at or before the child's paediatric appointment can help identify any symptoms of stress, anxiety or depression.

Following the questionnaire, parents / caregivers will be provided with the results of the questionnaire along with an information resource sheet. This will include information on anxiety, stress and depression, as well as different agencies they can contact to get support.

Parents / caregivers will be followed up at 3 and 6 months to see if they have any changes to mental health and quality of life, and whether they accessed any support services. Participants who did not complete the 3-month survey will be asked at the 6-month clinic visit to provide responses on an iPad to up to 5 questions selected from the 3-month survey. A text message will be sent prior to the visit to inform them.

The primary aim for this trial is to see whether parents / caregivers find this process acceptable, and whether it can work in a busy hospital clinic.

This single-arm prospective trial aims to evaluate the feasibility and acceptability of implementing a mental health screening and support pathway (the SOS model) for parents and caregivers of children with chronic conditions (CMs) in an outpatient clinic setting. The study will recruit 100 parents and caregivers attending the Royal Children's Hospital (RCH) outpatient clinics.

For the remainder of this protocol, all parents and caregivers will be referred to as 'caregivers.'

The primary objective is to test a systematic approach where:

• Caregivers undergo mental health screening using validated measures.
• Receive feedback on their mental health screening measure scores from their RCH clinician or a researcher
• All caregivers are provided with resources on appropriate support pathways

The support framework will include:

• Psychoeducational resources describing symptoms of anxiety, depression and stress
• Description of referral pathways to primary care physicians for mental health plans, enabling access to government-funded psychological support
• Connection to existing online mental health resources

By evaluating this approach, the trial seeks to determine the:

• acceptability of the screening process to both caregivers and clinicians
• feasibility of screening and feedback for caregivers attending their child's outpatient hospital appointment
• practicality of integrating mental health screening and feedback into routine outpatient care
• effectiveness of the referral pathways in connecting parents to appropriate support services
• barriers or facilitators to implementing this model of care The findings will inform whether this screening and support model could be implemented as part of standard care for caregivers of children with chronic conditions.

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

Exclusion Criteria:

• need for an interpreter to complete informed consent