Purpose of the PSP and background
The purpose of this protocol is to clearly set out the aims, objectives and commitments of the Child Maltreatment Priority Setting Partnership (PSP) in line with James Lind Alliance (JLA) principles. The Protocol is a JLA requirement and will be published on the PSP’s page of the JLA website. The Steering Group will review the Protocol regularly and any updated version will be sent to the JLA.
The JLA is a non-profit making initiative, established in 2004. It brings patients, carers and clinicians together in PSPs. These PSPs identify and prioritise the evidence uncertainties, or ‘unanswered questions’, that they agree are the most important for research in their topic area. Traditionally PSPs have focused on uncertainties about the effects of treatments, but some PSPs have chosen to broaden their scope beyond that. The aim of a PSP is to help ensure that those who fund health research are aware of what really matters to patients, carers and clinicians. The National Institute for Health and Care Research (NIHR) coordinates the infrastructure of the JLA to oversee the processes for PSPs, based at the NIHR Coordinating Centre (NIHRCC), University of Southampton.
One in every 3 Canadians (32%) report that they were exposed to some form of child maltreatment, including physical, sexual, and/or emotional abuse, neglect and intergenerational trauma. Child maltreatment is a transdiagnostic risk factor for and a leading cause of mental health challenges, including depression, anxiety, and post-traumatic stress symptoms. Risk factors for child maltreatment, including parent mental distress and family stress, have increased two-fold during the COVID-19 pandemic. As such, there is an urgent need to support youth and families following exposure to maltreatment and to mitigate its harm.
Canada is a world leader in childhood maltreatment research. Yet, the perspectives of youth with lived experiences of maltreatment are rarely included in child maltreatment research. Meaningfully engaging youth (18-30 years) and caregivers (primary caregiver of an individual who experienced maltreatment between 0-18 years of age) in research as equal collaborators will result in impactful research that is reflective of, and relevant to, the needs of youth and families.
The goal of this PSP is to identify key research priorities for the field of child maltreatment. Youth, caregivers, and clinicians will guide the selection and formulation of the research priorities. Our team will then disseminate the top ten research priorities to policymakers, stakeholders, and the public.
Aims, objectives, and scope of the PSP
The aim of the Child Maltreatment PSP is to identify the unanswered questions about child maltreatment from patient, carer and clinical perspectives and then prioritize those that patients, carers and clinicians agree are the most important for research to address.
The objectives of the PSP are to:
- work with patients, carers and clinicians to identify uncertainties about child maltreatment, its assessment, treatment, and prevention
- to agree by consensus a prioritised list of those uncertainties, for research
- to publicise the results of the PSP and process
- to take the results to research commissioning bodies to be considered for funding.
For the purpose of this PSP, child maltreatment is defined as:
‘The abuse and neglect that occurs to children under 18 years of age. It includes all types of physical and/or emotional ill-treatment, sexual abuse, neglect, negligence and commercial or other exploitation, which results in actual or potential harm to the child’s health, survival, development or dignity in the context of a relationship of responsibility, trust or power’ - World Health Organization, 2022
We will accept questions about assessment, prevention, and treatment of child maltreatment. Assessment includes screening for and identifying child maltreatment. Prevention includes interventions aiming to stop maltreatment from happening, as well as interventions that detect early signs of child maltreatment and aim to slow down and/or stop the consequences of child maltreatment. Treatment includes managing acute and chronic symptoms of child maltreatment. We will include questions about child maltreatment’s assessment, prevention, and treatment delivered by a variety of organizations (e.g., healthcare, social work, child & family services) and focusing on youth, as well as their caregivers, families, and broader systems (e.g., schools, communities).
We will exclude questions about maltreatment that occurs at the age of 19 years or later in life. We will exclude questions about prevalence, predictors, outcomes, and mechanisms of child maltreatment. We acknowledge that child maltreatment is a subset of traumatic and adverse experiences that may occur in childhood and adolescence. However, to focus the scope of this Child Maltreatment PSP, we will not include questions about other traumatic (e.g., living in a war zone, surviving a serious accident, witnessing a natural disaster) and adverse (e.g., living with a relative with a mental health condition, having an incarcerated caregiver, experiencing caregivers’ divorce) experiences. Questions about these will be included only if they relate to or result in child maltreatment.
We are interested in the perspectives of young people who experienced child maltreatment in the childhood and/or adolescence (i.e., between the ages of 0 and 18 years inclusive), caregivers of these young people, and professionals from a variety of sectors working with young people who experienced maltreatment.
‘Professionals’ include physical and mental health professionals (medical doctors, psychiatrists, psychologists, nurses, other healthcare professionals), social work professionals, non-profit professionals, youth workers, and other professionals who work with young people who experienced maltreatment.
The Steering Group is responsible for discussing what implications the scope of the PSP will have for the evidence-checking stage of the process. Resources and expertise will be put in place to do this evidence checking.
The Steering Group
The Steering Group includes membership of patients and carers and clinicians , as individuals or representatives from a relevant group.
The Child Maltreatment PSP will be led and managed by a Steering Group involving the following:
Youth and carer representative/s
Katelyn Greer (Youth, Alberta)
Rebeka Nicholson (Youth, Alberta)
Prachi Khanna (Youth, British Colombia)
Anissa Viveiros (Youth, Alberta)
Sheila Nankia (Youth, Ontario)
Clinical representative/s
Dr. Nicole Racine, Research Chair in Child and Youth Mental Health CHEO, University of Ottawa (Ontario)
Dr. Joanna Henderson, Senior Investigator, Centre for Addiction and Mental Health (Ontario)
Dr. Gina Dimitropoulos, University of Calgary (Alberta)
Dr. Melanie Doucet, Child Welfare League of Canada (Ontario)
Dr. Cailey Hartwick, Child Abuse Service, Alberta’s Children’s Hospital (Alberta)
Dr. Sheri Madigan, University of Calgary (Alberta)
Michael Bowe, York Region Children's Aid Society (Toronto, Ontario)
Dr. Ciann Wilson, Wilfrid Laurier University (Waterloo, Ontario)
Dr. Robert Lees, Ministry of Children and Family Development, Chilliwack Youth Health Centre (Chilliwack, BC)
Dr. Anna Karwowska, Child and Youth Protection, Children's Hospital of Eastern Ontario (Ottawa, Ontario)
Kimberly Courtney, Family and Patient Engagement Research Coordinator, Children's Hospital of Eastern Ontario (Ottawa, Ontario)
Dr. Nancy Young, Senior Scientist, Children's Hospital of Eastern Ontario (Ottawa, Ontario)
Kafui Sawyer, University of Ottawa (Ontario)
Dr. Maria Pavlova, University of Ottawa (Ontario)
Blaine Wolfe, Children’s Hospital of Eastern Ontario Research Institute (Ottawa, Ontario)
Project coordinator
Celeste Holy, University of Ottawa (Ontario)
James Lind Alliance Adviser and Chair of the Steering Group
Louise Dunford
The Steering Group will agree the resources, including time and expertise that they will be able to contribute to each stage of the process, with input and advice from the JLA.
Partners
Organisations and individuals will be invited to be involved with the PSP as partners. Partners are organisations or groups who will commit to supporting the PSP, promoting the process and encouraging their represented groups or members to participate. Organisations which can reach and advocate for these groups will be invited to become involved in the PSP. Partners represent the following groups:
- a child or teen with lived experience of abuse (physical, emotional, or sexual abuse), neglect (emotional or physical), or intergenerational trauma
- a caregiver of a child or teen with lived experience of abuse or neglect
- health and social care professionals - with experience treating or working with children with maltreatment exposure and their families.
Supporting Partners
These organizations have expressed interest in supporting the mission of the Child Maltreatment PSP
- LUNA Child and Youth Advocacy Centre
- Treehouse Child and Youth Advocacy Centre
Exclusion criteria
Some organisations may be judged by the JLA or the Steering Group to have conflicts of interest. These may be perceived to potentially cause unacceptable bias as a member of the Steering Group. As this is likely to affect the ultimate findings of the PSP, those organisations will not be invited to participate. It is possible, however, that interested parties may participate in a purely observational capacity when the Steering Group considers it may be helpful.
The methods the PSP will use
This section describes a schedule of proposed steps through which the PSP aims to meet its objectives. The process is iterative and dependent on the active participation and contribution of different groups. The methods used in any step will be agreed through consultation between the Steering Group members, guided by the PSP’s aims and objectives. More details of the method are in the Guidebook section of the JLA website where examples of the work of other JLA PSPs can be seen.
Step 1: Identification and invitation of potential partners
Potential partner organisations will be identified through a process of peer knowledge and consultation, through the Steering Group members’ networks. Potential partners will be contacted and informed of the establishment and aims of the Child Maltreatment PSP.
Step 2: Awareness raising
PSPs will need to raise awareness of their proposed activity among their patient, carer and clinician communities, in order to secure support and participation. Depending on budget, this may be done by a face-to-face meeting, or there may be other ways in which the process can be launched, e.g. via social media. It may be carried out as part of steps 1 and/or 3. The Steering Group should advise on when to do this. Awareness raising has several key objectives:
- to present the proposed plan for the PSP
- to generate support for the process
- to encourage participation in the process
- to initiate discussion, answer questions and address concerns.
Step 3: Identifying evidence uncertainties
The Child Maltreatment PSP will carry out a consultation to gather uncertainties from patients, carers and clinicians. A period of approximately 6 months will be given to complete this exercise, however, this timeline is subject to change with the input of the Steering Group.
The Child Maltreatment PSP recognises that the following groups may require additional consideration to ensure a diverse and wholistic perspective.
- Racially/ethnically diverse youth
- Gender and sexually diverse youth
- Socially diverse youth
We will aspire for a considerable proportion of the responses (e.g., 50%) to be from members of diverse communities.
The Steering Group will use the following methods to reach the target groups
- Steering committee members who work directly with diverse communities will share the surveys with their networks and communities to ensure diverse sampling. For example, Ms. Sawyer will share the survey with child welfare and community mental health organizations across Canada; Ms. Doucet will share the survey with youth who have experienced the child welfare system.
- Online presence (e.g., social media, youth listservs, steering committee networks)
- The availability of all PSP materials in both English and French.
Sources of evidence will include:
- Peer-reviewed published
- umbrella syntheses
- meta-analyses
- systematic, scoping, or other reviews
- Are published in English or French
- Include studies of children or adolescents <18 years of age or report on child/adolescent outcomes
- Include studies focused on child maltreatment.
Step 4: Refining questions and uncertainties
The consultation process will produce ‘raw’ questions and comments indicating patients’, carers’ and clinicians’ areas of uncertainty. These raw questions will be categorised and refined by Celeste Holy (University of Ottawa) and Maria Pavlova (University of Ottawa) into summary questions which are clear, addressable by research, and understandable to all. Similar or duplicate questions will be combined where appropriate. Out-of-scope and ‘answered’ submissions will be compiled separately. The Steering Group will have oversight of this process to ensure that the raw data is being interpreted appropriately and that the summary questions are being worded in a way that is understandable to all audiences. The JLA Adviser will observe to ensure accountability and transparency.
This will result in a long list of in-scope summary questions. These are not research questions and to try and word them as such may make them too technical for a non-research audience. They will be framed as researchable questions that capture the themes and topics that people have suggested.
The summary questions will then be checked against evidence to determine whether they have already been answered by research. This will be done by Patrick Labelle (University of Ottawa). The PSP will complete the JLA Question Verification Form, which clearly describes the process used to verify the uncertainty of the questions, before starting prioritisation. The Question Verification Form includes details of the types and sources of evidence used to check uncertainty. The Question Verification Form should be published on the JLA website as soon as it has been agreed to enable researchers and other stakeholders to understand how the PSP has decided that its questions are unanswered, and any limitations of this.
Questions that are not adequately addressed by previous research will be collated and recorded on a standard JLA template by Maria Pavlova (University of Ottawa). This will show the checking undertaken to make sure that the uncertainties have not already been answered. The data should be submitted to the JLA for publication on its website on completion of the priority setting exercise, taking into account any changes made at the final workshop, in order to ensure that PSP results are publicly available.
The Steering Group will also consider how it will deal with submitted questions that have been answered, and questions that are out of scope.
Step 5: Prioritisation – interim and final stages
The aim of the final stage of the priority setting process is to prioritise through consensus the identified uncertainties about child maltreatment. This will involve input from patients, carers and clinicians. The JLA encourages PSPs to involve as wide a range of people as possible, including those who did and did not contribute to the first consultation. There are usually two stages of prioritisation.
- Interim prioritisation is the stage where the long list of questions is reduced to a shorter list that can be taken to the final priority setting workshop. This is aimed at a wide audience, and is done using similar methods to the first consultation. With the JLA’s guidance, the Steering Group will agree the method and consider how best to reach and engage patients, carers and clinicians in the process. The most highly ranked questions (around 25) will be taken to a final priority setting workshop. Where the interim prioritisation does not produce a clear ranking or cut off point, the Steering Group will decide which questions are taken forwards to the final prioritisation.
- The final priority setting stage is generally a one-day workshop facilitated by the JLA. With guidance from the JLA and input from the Steering Group, up to 30 patients, carers and clinicians will be recruited to participate in a day of discussion and ranking, to determine the top 10 questions for research. All participants will declare their interests. The Steering Group will advise on any adaptations needed to ensure that the process is inclusive and accessible.
Dissemination of results
The Steering Group will identify audiences with which it wants to engage when disseminating the results of the priority setting process, such as researchers, funders and the patient and clinical communities. They will need to determine how best to communicate the results and who will take responsibility for this. Previous PSPs’ outputs have included academic papers, lay reports, infographics, conference presentations and videos for social media.
It should be noted that the priorities are not worded as research questions. The Steering Group should discuss how they will work with researchers and funders to establish how to address the priorities and to work out what the research questions are that will address the issues that people have prioritised. The dissemination of the results of the PSP will be led by Dr. Nicole Racine.
The JLA encourages PSPs to report back about any activities that have come about because of the PSP, including funded research. Please send any details to the JLA.
Agreement of the Steering Group
The Child Maltreatment PSP Steering Group agreed the content and direction of this Protocol on Feb 5, 2024.