Background
Despite all the good developments in medical care in the Netherlands, unfortunately more than 100 people die of cancer every day. Also, in one in five people, the disease has already spread to other parts of the body at the time of diagnosis. Unfortunately, the prognosis of people with metastatic cancer is poor. Timely palliative care for these people contributes to a better quality of life for patients and their loved ones. Palliative care takes into account the physical, emotional, social and spiritual needs of the patient and their loved ones. In the case of psychosocial needs (i.e. in the field of emotional, social and spiritual) people also often seek care and support from peers and/or trained volunteers, referred to as informal care. The people who find their way to this informal care are very satisfied with it and experience a lot of added value. For people with metastatic cancer, there is support available from the IPSO centers (oncology) as well as from the wider palliative domain. There are also many organizations that facilitate peer contact with people who are terminally ill, or that organize the deployment of trained volunteers in the palliative phase.
We know that the number of people with cancer will increase even further in the coming years, due to the aging of the Netherlands. The demand for care for both oncological and palliative informal care providers will increase. Collaboration between these informal care providers contributes to improving the current range of informal care for people with metastatic cancer and their loved ones and ensures that the care providers can jointly bear the increase in care.
To improve the current range of informal care and support for people with metastatic cancer, we will take the following steps;
- We are going to map out the current range of informal care and support for people with metastatic cancer
- We will map the experiences and needs of people with metastatic cancer and their loved ones,
- We are going to make a guide for a better joint offer of informal care and support for this target group
- We are going to implement and evaluate a joint offer for people with metastatic cancer and their loved ones in two regions
- With these lessons learned, we will fine-tune the guide together with experts
- The guide will be included in its entirety in the IPSO Academy, so that all 81 IPSO centers can work with it
- The guide is widely distributed, including through the channels of our partners.
The result of these steps is threefold, namely:
- In two regions, the joint provision of informal care and support for people with metastatic cancer has improved
- A national guideline for optimizing this informal care and support is available with which both IPSO centers and providers of informal palliative care and support can improve their regional offerings
- To promote awareness and wider use of this guide
The project is an initiative of IPSO and IKNL together, in which we collaborate with regional and national organizations such as Palliative Care Netherlands (PZNL), Agora and Café Doodgewoon. In addition, an expert group will be put together, which will actively participate in the development of the guide. These are experts from IPSO centers, from the Palliative Care networks, experts by experience and volunteers who provide this care. Throughout the project, experts by experience are asked to think along with the project group, so that all steps are well suited to the target group. This is integrated in the standard approach to projects within IPSO.