Abstract Purpose In mental health care, patients and their care providers may conceptualize the nature of the disorder and appropriate action in profoundly diferent ways. This may lead to dropout and lack of compliance with the treatments being provided, in particular in young patients with more severe disorders. This study provides detailed information about patient–provider (dis)agreement regarding the care needs of children and adolescents. Methods We used the Camberwell Assessment of Need (CANSAS) to assess the met and unmet needs of 244 patients aged between 6 and 18 years. These needs were assessed from the perspectives of both patients and their care providers. Our primary outcome measure was agreement between the patient and care provider on unmet need. By comparing a general outpatient sample (n=123) with a youth-ACT sample (n=121), we were able to assess the infuence of severity of psychiatric and psychosocial problems on the extent of agreement on patient’s unmet care needs. Results In general, patients reported unmet care needs less often than care providers did. Patients and care providers had the lowest extents of agreement on unmet needs with regard to “mental health problems” (k=0.113) and “information regarding diagnosis/treatment” (k=0.171). Comparison of the two mental healthcare settings highlighted diferences for three-quarters of the unmet care needs that were examined. Agreement was lower in the youth-ACT setting. Conclusions Clarifcation of diferent views on patients’ unmet needs may help reduce nonattendance of appointments, noncompliance, or dropout. Routine assessment of patients’ and care providers’ perceptions of patients’ unmet care needs may also help provide information on areas of disagreement.
ObjectiveHospital-to-home (H2H) transitions challenge families of children with medical complexity (CMC) and healthcare professionals (HCP). This study aimed to gain deeper insights into the H2H transition process and to work towards eHealth interventions for its improvement, by applying an iterative methodology involving both CMC families and HCP as end-users.MethodsFor 20-weeks, the Dutch Transitional Care Unit consortium collaborated with the Amsterdam University of Applied Sciences, HCP, and CMC families. The agile SCREAM approach was used, merging Design Thinking methods into five iterative sprints to stimulate creativity, ideation, and design. Continuous communication allowed rapid adaptation to new information and the refinement of solutions for subsequent sprints.ResultsThis iterative process revealed three domains of care – care coordination, social wellbeing, and emotional support – that were important to all stakeholders. These domains informed the development of our final prototype, ‘Our Care Team’, an application tailored to meet the H2H transition needs for CMC families and HCP.ConclusionComplex processes like the H2H transition for CMC families require adaptive interventions that empower all stakeholders in their respective roles, to promote transitional care that is anticipatory, rather than reactive.InnovationA collaborative methodology is needed, that optimizes existing resources and knowledge, fosters innovation through collaboration while using creative digital design principles. This way, we might be able to design eHealth solutions with end-users, not just for them.
MULTIFILE
In the Netherlands, client and family participation in care for people with intellectual disabilities has been in vogue for a long time, and increasingly receives attention (KPMG and Vilans 2017). However, the perspective and experiential knowledge of service users and relatives is often still insuBiciently used for the co-creation of care. The professional perspective is often still dominant. In addition, professionals mainly focus on clients and less on relatives, even though relatives often play an important role in the client’s (quality of) life (Wiersma 2017). The project ‘Inclusive Collaboration in Disability Care’[1] (ICDC) focusses on enhancing equal communication between people with intellectual disabilities, their relatives, and professional caregivers, and hence contributes to redressing power imbalances in longterm care. It investigates the question: “How can the triangle of client, relative and professional caregiver together co-create better care and support?”.
