The different parts of the research program

Within the frame of this research project, the FTI is evaluated in the context of specialized palliative home care in the Stockholm area (12 services consisting of several home care units). These specialized care units have been randomized and allocated to an intervention group (6 services), or to a control group (6 services). In the services allocated to the intervention all social workers and a few registered nurses have been trained to use the FTI. After completing their training, these social workers/registered nurses perform the FTI within the frame of their clinical work. The control services provide support according to standard care principles. The eligible families for the study are parents/legal guardians with at least one child under the age of 25. Families will be recruited during 2022-2024, whereupon the effects of the FTI will be evaluated.

This research project evaluates FTI in a children’s hospital in Sweden. Medical social workers employed at the hospital have been trained to use FTI during 2021-2022 and during 2022-2023, they have worked with the FTI in their everyday clinical care. Families are invited to participate if they include one of the following: 1) a child with an illness that can be treated, but where treatment might fail, e.g. cancer, 2) a child with a serious illness where premature death is inevitable e.g. cystic fibrosis, trisomy 13 and 18, 3) a child with progressive illness where there are no treatment options e.g. different syndromes, or 4) children with chronic illness, not life-limiting, but very impairing and where complications could lead to premature death, e.g. multifunctional impairment and damages related to hypoxia. The effects of the FTI are evaluated as well as the families’ experiences of participating.

This part of the research program evaluates the FTI within cancer care when a parent has a cancer illness and has at least one child under the age of 25. This project was initiated as it was expressed that the FTI should be introduced earlier than in specialized palliative care, where the FTI was evaluated as a pilot study in 2017. All the full time employed medical social workers at a cancer unit in a university hospital participate in the study and have been trained in FTI during 2021-2022 and use the intervention in their clinical work during 2022-2024. The effects of the FTI will be evaluated as well as the families’ experiences of participating.

When the FTI was pilot-tested in pediatric cancer care in 2018, about half of the included children/families had a severe illness with a rather poor prognosis. Consequently, we wish to test whether the FTI is suitable to use in a children’s hospice as well. Hence, the medical social worker at the only children’s hospice in Sweden have been trained in FTI and during 2022-2023, she will test the intervention with families cared for at Lilla Erstagården. The evaluation will focus on the families’ experiences of participating as well as the social worker’s experiences of using the FTI.

A major part of this research program includes implementation studies of the FTI in clinical practice in the 4 contexts in question (Specialized palliative home care, Cancer care, Children’s hospital and Children’s hospice). We will evaluate implementation strategies, and also barriers and facilitators to implement the FTI. The focus lies both on the intervention (how suited is the FTI for the purpose), but also on factors influencing the use of the FTI, e.g. the significance of the working environment. Within the frame of this part of the research program, all medical social workers trained in FTI (about 50) are included and we follow their experiences of using the FTI over time. Medical social workers in the control services are also included. Further, the social workers’ compliance to the FTI manual is evaluated, the social workers’ recruitment of families, the managers’ influence on the process etc.

Since the effects of the FTI will be evaluated with the help of questionnaires and interviews, only families speaking the Swedish language are eligible to participate. To enable the use of an interpreter, we have included a minor study where Arabic-speaking families at a children’s hospital in Sweden may participate with the help of an interpreter. The use of the interpreter within the frame of the FTI will be evaluated both from the family and social worker perspective.

During 2017-2018, the FTI was pilot-tested in pediatric oncology. This was the first research study where the FTI was used in children’s care, as it had previously only been tested in adult health care when a parent was ill. There are several publications from this pilot-project, but continued analyses and manuscript writing are underway.

Since the FTI has not been evaluated from a long-term perspective, we will perform a long-term follow up during 2022-2023 with the families who participated in the FTI in the contexts of specialized palliative home care about 5 years ago. The families have been interviewed and analyses and manuscript writing are underway.

To evaluate whether the FTI has had a meaning for families in longer term, we will carry out a long-term follow-up with families in pediatric oncology who took part in the FTI 4-5 years ago. Families have been interviewed during 2023.