Abstract
Introduction: Families with severe and enduring problems across different life domains (SEPAD) are often in need of support from different (youth)care organizations. To ensure coherent and tailored support for these families, integrated care is essential. The organization of this care is, however, complicated: the problems these families face tend to occur simultaneously and interact with each other. Some of these problems are severe and require intensive support in tertiary settings, yet others are milder and require primary care. Furthermore, there is a high risk of reoccurring crisis situations, which highlights the need for support that can be flexibly scaled up or down. Hence, one of the key elements of integrated care is to ensure this continuity of care. However, organizing continuous care, from low threshold support to specialist mental health care appears to be difficult in practice.
In an attempt to meet the need for integrated care for these families, we see the formation of various local specialized integrated teams (SITs). These SITs consist of professionals from various specialist providers, such as youth mental health, youth and parenting support, care for people with mild intellectual disabilities and adult psychiatry. These teams aim to organize both low-threshold support and specialist mental health care for all family members.
However, there is little knowledge about whether this integrated specialist way of working contributes to continuous support for families with SEPAD, and specifically, whether professionals in SITs are able to flexible scale up and down in care. Specifically scaling down seems to be problematic. This study explores barriers and facilitators in scaling down support from the perspective of SITs to ensure continuous care and to meet the needs of families with SEPAD.
Method: In this qualitative participatory action research project, five local SITs in The Netherlands participated. 50 semi-structured interviews with representatives of local districts, organizations, professionals and parents and youth were conducted. In addition, case discussions were observed and in learning sessions, participants exchanged and reflected on preliminary results. At the end of each learning session, participants formulated their action steps. All data were transcribed, coded and analyzed. An unique element of the study was the collaboration with practitioner-researchers: professionals from the SITs who functioned as a researcher throughout the study.
Results: SITs offer intensive, but short-term support (9-12 months). The care they provide is often tailored to the family's needs. During the support of the SITs there are possibilities to scale up or down in care within the organizations represented in SITs (e.g. more/less often per week support or trauma therapy). On the other hand, the embedding of SITs in the chain of care appears to be an issue, especially when it comes to scaling down in care. This hinders continuous support. Also, professionals from SITs can experience feelings of uncertainty to scale down.
Establishing integrated initiatives requires co-creation with the entire chain of care, on the grounds that it is the responsibility of this entire chain. More research is needed on why scaling down is convoluted and how to improve it.