Supplemental clinical data forms
Assessment of care needs at home
There are many assessment tools! These standardized tools were developed over the years for different purposes and varying populations of children with medical complexity. The benefits of using a standardized tool are efficiency, precision and consistency of the assessment; this can be a significant advantage when there are many different individuals (with varying degrees of expertise) completing the assessment. It is important to verify that the assessment tool being used is suitable to the population that it is being used with. Many tools on homecare needs were designed for elderly adults and not children. In Quebec, as of October 2017, there is no designated tool currently being used by all CIUSSS (Centre intégré universitaire de santé et de services sociaux) for children with medical complexity. Each CIUSSS, each CLSC (Centre local de santé communautaire), has their own internal method of assessing care needs at home. In the future, we hope that there will be a standardized process for children with medical complexity.
Depending on your region, there may be an existing mandate as to:
who does the assessment;
which assessment tool is used;
how the results of the assessment are translated into services.
No matter what the situation is in your region, the main priority is to match appropriate services to the care needs. Remember that the care needs of the child and family are dynamic. Thus, optimal support is flexible and subject to revision over time. For example, for a child who is attending school most of the time, the family may require extra support during periods of illness, during summer school holidays or if there is an increase in the child’s care needs. While it is easy to say that optimal support should be flexible and adjustable, in reality this is a challenge for many healthcare organizations, for a variety of reasons. Optimal homecare support involves an ongoing, dynamic negotiation between the family and the various healthcare providers. Having a well-established team, clear care goals and respectful communication are helpful in addressing this challenge.
In general, the needs assessment includes two major components: 1) needs of the child and 2) needs of the family. The needs of the child may be defined in several different ways including by:
functional capacity (for example, ability to complete/participate in activities of daily living);
medical issue (for example, tracheostomy requires suctioning 4 times per day);
diagnosis (for example, type 1 diabetes implying frequent glucose checks and insulin administration).
We favor a functional capacity based assessment. The dynamic global needs of the child, with regards to growth, development and psychosocial health must also be considered. See the section on discharge planning for more details.
The needs of the family are likewise unique, complex and dynamic. These include:
supporting the family in the care of their child at home;
general home support (for example, housekeeping);
financial support (for example, for care support, equipment and supplies, transportation, respite etc);
help with the siblings (for example, babysitting);
psychosocial support (for example, services of a social worker, psychologist or educator).
In Québec, the MSSS (Ministère de la santé et des services sociaux) has indicated that transitioning a child with medical complexity from the hospital to the home is a shared responsibility between the hospital and community care teams. The MSSS provided a set of guidelines in 2016 which defined the roles and responsibilities of the CHU (Centre hospitalier universitaire) and the CIUSSS. Essentially, these guidelines stated that the hospital providers (CHU) are responsible to identify and detail the clinical and technological needs of the child including the number of hours of support required at home. The community providers (the CIUSSS) are responsible to evaluate services required to meet the clinical, technological care needs identified for the child and the family. To meet these responsibilities, the 4 pediatric CHU (Centre hospitalier universitaire) in the province of Québec worked in collaboration on the:
- Consensus recommendations and documents, see Quebec consensus recommendations and Requesting homecare services – Québec consensus documents.
- Website! The website materials provide evidence-informed, standardized information that clearly describe each care practice
- A pilot project to facilitate transition home for children/families living on the Island of Montreal (contact us to learn more about this project).
Health care professionals looking after children with medical complexity in Quebec realized that there was a significant regional variation in how each center was:
- assessing home care needs;
- making recommendations for homecare support;
- advocacy efforts in obtaining homecare support.
To address this variation and to fulfill our collective responsibility as outlined by the MSSS (Ministère de la santé et des services sociaux), the four pediatric CHU in the province of Québec: Centre hospitalier de l’Université de Sherbrooke (CHUS), Centre hospitalier universitaire de Québec – Université Laval, Centre hospitalier universitaire Sainte-Justine, Centre universitaire de santé McGill (CUSM – Hôpital de Montréal pour Enfants) in collaboration with the National Program for Home Ventilatory Assistance undertook a two year project (special thanks to Dr Marie Gauthier and Ms Isabelle St-Sauveur for their expertise and leadership in this process and to Ms Sylvia Saragossi for her administrative support) to standardize our recommendations for homecare support, using an evidence-based, evidence-informed and family-centered methodology for the following categories of care:
- Parenteral Nutrition
- Peritoneal Dialysis
- Tracheostomy Care
- Non-invasive ventilation (BiPAP and CPAP)
- Invasive Ventilation (based on the Canadian Thoracic Society recommendations published in 2017).
What did we do?
Set up a task force for each specific caetgory of care including clinical experts from each CHU.
Set up a series of teleconferences where we discussed and reviewed:
- regional practices;
- existing homecare recommendations – search and critical appraisal of existing literature;
- prepared a detailed description of the care required at home, based upon the recommended methods of care, as described on this website.
In order to estimate the magnitude of care at home for caregivers, a detailed survey for families was created as a result of these discussions. This survey was adapted to each category of care listed above and then distributed to families caring for a child with at least one type of care need. Regional centers were encouraged to survey as many of their families as possible, including children in all age groups. For each care task (for example, suctioning a tracheostomy or preparing parenteral nutrition for administration) families were specifically asked to: 1) estimate the time required 2) report the frequency of the care during the day and 3) verify the number of caregivers required to provide the care safety at home (for example, to position a child safely for central venous line access). Depending upon the category of care, 25- 100% of all Quebec families providing specialized care at home completed the surveys.
Using this detailed information, along with the analysis of existing evidence-informed recommendations for homecare, a consensus guideline was create that describes:
Care specific recommendations considering three levels of intensity:
Each level of intensity specifies:
a) average time/day dedicated for the sum of specific care tasks including direct and indirect care (for example, surveillance of an infant with a critical airway by a trained caregiver);
b) average recommendation of hours of homecare support (with the assumption that families would provide at least 50% of the total care required);
c) key elements associated with an increase in the care needs for each category of care;
d) generic non-medical variables, predominantly psychosocial in nature, requiring consideration in the global determination of homecare support (for example, single parent, other high-needs siblings, etc).
Through an iterative process of review and revision, these recommendations were finalized by clinical experts at all 4 CHU and approved by each institution.
Requesting homecare services
As soon as the clinical and technological care needs of the child are known, even if not precisely and even if the child is not yet medically stable, a request for community health services should be made early to jointly plan the transition of care from the hospital to the community. Early engagement with families is essential in this process and a key element in coaching families towards empowerment and shared decision-making. See Discharge planning for a child with complex care needs at home: engage the family from the beginning. Along with the family, identify key members of the hospital and community team and start the conversation to:
- identify and describe the child’s and family’s needs and
- explore services to meet these needs.
In many regions, of Quebec and elsewhere, community health services may be unfamiliar with referrals for children with exceptional homecare needs. Unfortunately, many existing service structures are outdated or diagnosis-based rather than function-based. Given the differential in population size, a majority of homecare initiatives have been focused on care for the fragile elderly rather than on the unique needs of infants, children and adolescents. These consensus recommendations (see below) were developed to aid in the valid and equitable requests for homecare support; use them to help as a reference and advocacy tool. Contact us if you wish to discuss these challenges further.
Just as we realized that there was wide regional variation in our regional recommendations for homecare support, we realized that there was also wide regional variation in the process by which a request was being made.
To address this unnecessary variation, a series of standardized documents were created, by type of medical care, to improve our communication of the medical and technological care needs of the child in a more functional manner to community partners. Using an iterative process, content was reviewed and finalized by members of the taskforce and formatted into a fillable PDF document.
These standardized documents contain detailed information on the core care needs at home for children needing peritoneal dialysis, parenteral nutrition, tracheostomy care, non-invasive ventilation and invasive ventilation. The description of the care needs includes the frequency of care, the average time required for each care task, the number of caregivers required to perform the care and method of care. Basically, each document provides a qualitative and quantitative description of the child’s homecare needs. It can be individualized for each child, using the Quebec consensus recommendation document as a guide.
How to use these documents?
These documents are intended to be used to compliment the standard information required when making a request for services to support the family in the care of the child at home. The additional information serves to illustrate the care tasks accomplished by the parents, helps identify the type of support required and describes the type of support needed to assist the family in daily care. This information, submitted in a standardized format (the fillable PDF document) is of particular benefit when the receiving healthcare partners are unfamiliar with the care needs. Depending on your region, the procedure to request community healthcare services may vary. In the province of Quebec, the DSIE (Demande the services interétablissements) is the clinical communication interface used when making a request for homecare support services. To summarize:
- contact and consult the appropriate community health partner early as soon as it is evident that the child/family will require homecare support;
- submit a request for homecare support as early as possible. In Quebec, use the DSIE form and attach the appropriately filled PDF document whenever applicable. In your request, ask for a meeting between the family, the hospital team and community team to begin discharge discussions;
- communicate directly with the community healthcare partners and form a team with them and the family;
- monitor closely the progress to identify early on potential barriers to discharge.