Aim of this project

• Development of bilingual evidence-based and evidence-informed to support and empower care givers in the safe and effective delivery of homecare to children with medical complexity.
• Consensus building by key partners on established methods of care; including development of evaluation methods to measure uptake of protocols in the home and community setting.
• Development of accompanying training manuals with emphasis on accessibility and clarity; including visual aids such diagrams.
• Formatting of materials within a pediatric complex care web-based educational resource including development of a maintenance and sustainability plan.
• Evaluation of the impact and uptake of standardized methods of care by families, skilled caregivers and educators; throughout Quebec.
• Optimizing methods of care accessibility through the development of an application for mobile devices, including tablets and smartphones.

Methods

1. Collection of evidence and existing methods of care
   Using the skills of a trained knowledge broker and a dedicated clinical practice consultant, existing methods of care in homecare for children were collected and evaluated using the AGREE II methodology, where applicable, to assess the quality of evidence. Using “appreciative enquiry”, Quebec’s four pediatric centres and community services (AQESSS) were surveyed with regards to current care practice; established methods of care were collected for comparison, if they existed. A web search of home care practices was also conducted, focusing on centres where large complex care programs were known to exist. Existing methods of care from the CLSC/CSSS network were requested. Care practices from well established provincial programs, such as the PNAVD, were also reviewed.
2. Comparison of existing protocols and identification of discrepancies
   For category of care, existing resources were compared to identify discrepancies in the educational recommendations provided to caregivers. High quality evidence-based guidelines for each category of care were sought, reviewed and compared to the materials used in Quebec. Discrepancies between recommendations within Quebec and between Quebec-based materials and evidence-based guidelines were formatted in tabular for further analysis. For each discrepancy (difference in care recommendation), a focused review of the literature was undertaken. Where no evidence was found, options for management were listed along with identified risks, benefits and costs of each option. Using the skills of a facilitator trained in the techniques of “appreciative inquiry” and the Delphi method, this data was presented to the core website development team at a 2 day face-to-face meeting. Resolution of each discrepancy was sought through a discussion of the available evidence and sharing of expert opinions. The aim was to establish a 100% consensus on final recommendations; where this was not reached, the team agreed to include the range of recommendations in the final content of the method of care.
3. Family input
   Interviews with parents of children with medical complexity, including home visits were completed to validate content domains and to solicit opinions of the formatting of the educational tools. Several mock-ups of potential web designs were presented to parents. The preferences and recommendations of caregivers were implemented in the final design of the site; content was also modified according to their feedback.
4. Methods of care validation
   A draft of each method of care was developed, using the content agreed upon by the processes described above. Illustrations were created to accompany each step of each method of care. The draft was circulated to all partners and feedback requested on content, clarity, and the illustrations. All feedback was reviewed by the core development team, revisions were made and a final version of the method of care was again circulated amongst partners for final validation.
5. Translation and web format of finalized content
   The majority of materials were written first in French and then translated into English. Materials were uploaded to the website as they were finalized.
6. Ongoing evaluation, maintenance and development of new resources
   In progress. Measurement of the use and impact of website materials is planned.