Background
Despite all the good developments in medical care in the Netherlands, unfortunately more than 100 people die of cancer every day. Furthermore, in one in five people, the disease has already spread to other parts of the body by the time of diagnosis. Unfortunately, the prognosis for 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 her loved ones. In the case of psychosocial needs (i.e. in the emotional, social and spiritual fields) people often also seek assistance and support from trained peers and/or volunteers, referred to as informal care. People who find their way into this informal care are very satisfied with it and experience great added value. For people with metastatic cancer, support is available from the IPSO (oncology) centers and the wider palliative domain. There are also many organizations which facilitate peer contact with the terminally ill or which organize the use of trained palliative care volunteers.
We know that the number of people with cancer will increase further in the coming years, due to the aging of the Netherlands. The demand for care for both informal cancer and palliative care providers will increase. Collaboration between these informal care providers helps improve the current range of informal care for people with metastatic cancer and their loved ones and ensures that care providers can jointly support scaling up care.
To improve the current range of informal care and support for people with metastatic cancer, we will take the following measures;
- We are about to chart 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 will make a guide to better joint provision of informal care and support for this target group
- We will implement and evaluate a joint offering for people with metastatic cancer and their loved ones in two regions
- With these lessons learned, we’ll fine-tune the guide together with the 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 disseminated, 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 informal palliative care and support providers can enhance their regional offerings
- Promote awareness and wider use of this guide
The project is an initiative of IPSO and IKNL together, where we collaborate with regional and national organizations such as Palliative Care Netherlands (PZNL), Agora and Café Doodgewoon. In addition, a group of experts will be established and will actively participate in the development of the guide. These are experts from IPSO centres, palliative care networks, experienced experts and volunteers who provide this assistance. Throughout the project, experienced experts are invited to think together with the project team, so that all phases are suitable for the target group. This is integrated into the standard approach to projects within IPSO.
