Children With Medical Complexity (CMC), Mental Health, Siblings
Conditions
Keywords
children with medical complexity, siblings, mental health
Brief summary
Children with medical complexity require intense caregiving from their parents and other health care providers, such as family doctors and medical specialists. These children have complex and lifelong medical conditions, and can be dependent on technology to help them breathe, move, or eat. From a young age, siblings of children with medical complexity typically assume caregiving roles to support their families. Caregiving may be associated with increased depression and anxiety in siblings, disruptions in routine, parental neglect, and constant changes. There is a gap in research on, and supports for, the mental health of these siblings. The goal of this study is to understand how to best support the mental health of siblings of children with medical complexity. A new model of support that involves measuring mental health symptoms in siblings age 10-17 through surveys and a mental health assessment conducted by social workers was created. Siblings who need support can be referred to social work and child psychiatry services that are integrated in the health care team the family already has a relationship with. By using screening and built-in supports, the investigators hope to create a pathway for siblings that is easy to access and proactive. Social workers can provide talk therapy to help siblings manage difficult emotions. Psychiatrists can provide a medical diagnosis if the sibling meets the criteria for an illness such as depression or anxiety. Psychiatrists can also recommend medications or resources to help siblings manage symptoms. This is a pilot study, meaning the investigators are exploring a new model and would like to gather more information on whether it is realistic to run this model, whether siblings will use it, and to gather information on sibling mental health patterns. The investigators will also be interviewing siblings so they can share their experiences with caregiving and any challenges with mental health support. Findings from this study can inform a larger, more robust study to measure how effective the model is compared to normal care. While sibling research is new, the investigators have already conducted a similar study where this model was tested on parents of children with medical complexity. The investigators found parents used the model and were linked to supports quickly.
Interventions
BEHAVIORALMental health assessment and diagnosis, psychotherapy, and treatment
Mental health need screenings will be conducted by the social workers, who will escalate cases for those meeting clinical cutoffs or requesting additional support in a stepped care approach. The first intervention level involves social workers who conduct assessment and psychotherapy, and determine appropriateness of referral to psychiatry. The second level involves referral to a child psychiatrist for diagnostic assessment and short term treatment of psychiatric illness (only for those who the social worker deems requiring a psychiatric consultation).
Sponsors
The Hospital for Sick Children
Women's College Hospital
Study design
Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
SCREENING
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
10 Years to 17 Years
Healthy volunteers
No
Inclusion criteria
* Have a sibling with medical complexity followed by the SickKids Complex Care program * Age 10 to 17 (inclusive) * Capable of completing the study measures independently or with the help of translation services
Exclusion criteria
\- Siblings who do not meet the three inclusion criteria
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Feasibility of recruitment | From enrollment to 12-month follow up | Recruitment rate (how many participants were enrolled VS how many were invited to participate) |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Feasibility Outcomes - Retention Rate | From enrollment to 12-month follow up | Retention rate is measured through how many participants exited the study before the 12-month time point. |
| Feasibility Outcomes - Rate of Positive Screens | From enrollment to 12-month follow up | Rate of positive screens on the mental health measures is measured through how many participants screen above the clinically significant cutoff on the Revised Children's Anxiety and Depression Scale (RCADS). |
| Sibling Mental Health - Depression and Anxiety Symptoms | From enrollment to 12-month follow up | This is measured using the Revised Children's Anxiety and Depression Scale (and Subscales) (RCADS). This questionnaire has 47 items and takes approximately 10 minutes to complete, and screens for symptoms of separation anxiety disorder, social phobia, generalized anxiety disorder, panic disorder, obsessive compulsive disorder, and low mood (major depressive disorder). The measure yields a T-score for each subscale that can be compared to clinical cutoffs. A T-score of above 65 on any subscale indicates the need for further assessment by social work before a referral to child psychiatry is made. |
| Sibling Mental Health - Proportions of Unmet Mental Health Needs | From enrollment to 12-month follow up | This is measured through rates of referral to social work and psychiatry services. |
| Quality of Life Measure | From enrollment to 12-month follow up | This is measured using the Pediatric Quality of Life Inventory (PedsQL). The questionnaire assesses four different dimensions: physical functioning, emotional functioning, social functioning, and school functioning. It consists of 23 items in total, with scores ranging from 0 to 100. Higher scores indicate better quality of life. |
| Mental Health Experiences of Siblings | At 12-month follow up | This will be explore through qualitative interviews focusing on caregiving role, impact of caregiving, gaps in mental health support, and barriers to support. |
| Social Work Clinical Outcomes - Engagement | From enrollment to 12-month follow up | This is measured by number of appointments and length of time of follow up with social work if the child is seen by social work beyond the initial assessment. This will be recorded on a form filled out by the social worker. |
| Social Work Clinical Outcomes - Reason for Referral | From enrollment to 12-month follow up | If the child is seen by social work beyond the initial assessment, the primary reason for referral will be recorded on a form filled out by the social worker. |
| Psychiatry Clinical Outcomes - Engagement | From enrollment to 12-month follow up | This is measured by number of appointments and length of time of follow up with psychiatry. This will be recorded on a form filled out by the psychiatrist. |
| Psychiatry Clinical Outcomes - Diagnosis | From enrollment to 12-month follow up | If the child is seen by psychiatry at WCH, any new diagnoses will be recorded on a form filled out by the psychiatrist. |
Contacts
CONTACTJulia Orkin
Outcome results
None listed