Current Studies

The PTS Study: Post-traumatic stress in parents of children with medical complexity and association with parent experiences in hospital 

The PTS Study recruited parents of children with complex medical needs when their child was admitted to hospital. Parents shared information and perceptions about their child’s care while in hospital, their perceptions around the severity of their child’s illness, stressful events in their lives, and their current sleeping habits and perceived quality of life, as well as demographic details. The purpose of this study is to improve understanding of the association between parents’ experience of their child’s illness and hospitalization and the development of post-traumatic stress symptoms (PTSS) and post-traumatic stress disorder (PTSD). Specifically, this study was geared to determine whether an acute hospitalization is associated with a change in traumatic stress symptoms over time, as well as to measure the prevalence of post-traumatic stress symptoms or post-traumatic stress disorder in parents of children with medical complexity. 

We recruited 75 participants who were tasked with filling out 3 surveys at enrollment (T0), within 72 hours of discharge (T1), and 8 weeks following discharge. 50 participants completed all surveys. Statistical analysis is underway to understand and evaluate the input we received from parents. 

The Trust Study: Development of physician-parental caregiver trust during inpatient care of children with medical complexity 

Trust is the foundation to effective therapeutic encounters and is an important facet of the patient-physician relationship. It is associated with important outcomes including: patient satisfaction, adherence to treatment, clinical outcomes and patient self-reported health. Establishment of a trusting relationship is a core component of patient and family-centered care and optimal communication because it provides meaning, importance and substance to the physician-patient relationship. Trust has been defined within the patient-physician context as a physician acting as an advocate for the best interest of their patient, showing genuine concern and treating their patients with respect and dignity. CMC often have frequent hospitalizations, which present further challenges due to a frequent lack of relational continuity, a known enabler of trust. 

A research gap exists regarding the important distinction between trust in the inpatient versus outpatient setting, and more understanding is needed around the unique context created when parental caregivers act as proxies for their children. The “Trust Study” is conducting qualitative interviews with physicians and parental caregivers of CMC about their experiences and concepts of trust/mistrust within the pediatric inpatient setting. The outcome of this research is to create recommendations for both parental caregivers and physicians to support the development of trusting relationships. 

Medical trauma (MT) is a critical but largely neglected issue that encompasses the physical and psychological reactions to illness and invasive treatment experiences. In a substantial proportion of children/caregivers, MTcan lead to post-traumatic stress symptoms such as anxietyand flashbacks. Children with medical complexity (CMC) are at particular risk due to theirhighhealthcare utilization, chronic diseases and developmental disabilities. There is increasing awareness of the deleterious effects of MTon children/caregivers, including CMC. Although trauma-informed care (TIC) principles are espoused in Alberta hospitals, there is a gap in their translation into practice and adaptation to MT. 

The goal of this research is to co-design TIC intervention(s), alongside stakeholders,that will mitigate MTin CMC/caregivers by addressing these objectives : (1) To describe essential components of TIC interventions; (2) To prototype a TIC Intervention using generative co-design; (3) To evaluate the co-design process.A generative co-design approach will enable creative engagement with patients/families and other stakeholders beginning with a pre-design phase of evidence synthesis and training. Then, a co-design workshop will lead participants through framing the issue, generating solutions and prioritization. Finally, a post-design phase will analyze data from the workshop and further develop the intervention. This research will produce an co-designed intervention that can proceed to pilot testing, a comprehensive description of essential components of TIC and a list of recommendations regarding co-design that can be used by other teams.

Harnessing Family Expertise and Experiences to Guide Inpatient Care for Children with Medical Complexity

Our team recently conducted an environmental scan survey to describe models of care for CMC when admitted to Canadian pediatric hospitals and found that there is minimal evidence and few evidence-based inpatient care models for CMC.  This survey also identified a knowledge gap due to a lack of representativeness to the broader CMC population leading to a potential incomplete picture of the experience of care for CMC. 

The design of meaningful and effective inpatient health services interventions for CMC must integrate the insights of a range of CMC patients and families.  Using a “co-design” approach, this study invites contributions from a wide range of CMC patient families that may not have been included or represented fully by existing research. The objective of the study is to create a comprehensive set of patient/family-identified issues, priorities, and recommendations that will inform and validate a CMC experience of care framework. 

This study investigates the availability and organization of resources to support children with medical complexity (CMC) at pediatric hospitals across Canada.  It asks the question, "how is pediatric inpatient care in Cnadian hospitals structured to respond to the needs of children with medical complexity?"  The Environmental Scan study team is administering a cross-sectional telephone survey of key informants working with CMC (e.g. physicians, registered nurses).  This survey will identify inpatient resources and needs for the CMC patient population in different provincial jurisdictions. 

The goal of this research it to identify resource availability and adaptability pertaining to the inpatient care of CMC. Results of this study will map inpatient services across Canada and lay the groundwork for future experimental studies to improve overall care for CMC and their families.