To be met and followed up with personalized healthcare
Service users agreed that efficient care coordination requires personalized healthcare with service user involvement at every stage. One said:
No two individuals are the same. Therefore, healthcare services must be adapted to meet each individual's needs.
It can be challenging for service users to receive healthcare even if they know their needs. When professionals approach them in a way that makes them feel respected, seen, and heard, it makes cooperation easier. A service user elaborated on this further:
It is crucial that professionals do not adopt a top-down attitude and that they communicate clearly without using complicated terminology. We feel stupid and hesitant to speak up when we do not understand what the professionals are saying.
Service users appreciated when healthcare was flexible and provided in environments where they felt safe. One of them said:
It can feel unsettling to have professionals come to your home when you are experiencing substantial symptoms of anxiety and depression.
Service users suggested measures such as follow-ups at the professional's office, at home, or outdoors during activities that provided new experiences. They also mentioned video calls or double appointments with GPs. Using humor, even in serious situations, was seen as beneficial. One service user said:
Not everything needs to be taken seriously. It is important to keep things light, use gallows humor, and be able to joke about difficult things.
Several service users found communicating with professionals in writing easier than by phone. Both service users and professionals shared positive experiences using text messages and wanted to continue such coordination measures. Service users could also communicate with professionals via e-mail. However, professionals could not respond to sensitive information through e-mail due to confidentiality issues. The ability to quickly and easily get in touch with professionals when needed was important for service users. Measures like having a direct number for their GP or other professionals they were familiar with made this easier. Still, while these personalized and flexible measures were useful, service users emphasized that improved health required that they made a major effort. One of them stated:
We have a responsibility for our health. We must take control of our own lives. It can take a long time to realize that something needs to change. Waiting for someone else to fix me does not work. That just keeps us stuck in the same old mess. Having services available does not help if we are not willing to change.
A balance between providing healthcare and allowing service users to take responsibility for their own lives
Professionals believed efficient care coordination involved personalized services adapted to service users' goals, resources, preferences, and needs. One professional stated:
The services should encompass what they are initially defined to do, but some service users may still have needs beyond that. In such cases, we must be curious, stretch ourselves, push limits, think outside the box, prioritize the most critical aspects, try new measures, and find solutions together.
Several professionals noted that some service users needed assistance in managing their health. In such situations, efficient care coordination for professionals meant liaising with necessary services and assisting service users with daily needs. Professionals acknowledged that service users are responsible for their own lives but did not want to place too much pressure on service users. One professional said:
It is a delicate balance to know how much help to provide while not assuming responsibilities that service users can handle themselves.
Professionals faced challenges in meeting service users' needs in cases where service users had refused healthcare, only accepted it from specific professionals, or had a different perspective on their needs compared to professionals' recommendations. These needs were often related to mental health but also to physical health. One professional noted:
Service users can be unpredictable in their willingness to receive healthcare. One day, they will receive; another day, they will not. In such situations, explaining what they are declining when they say no is crucial.