Clinical trial NCT03676283: Increasing Preparedness Through a Website
Official title: Increasing Preparedness for Caregiving, Death and Continued Life in Partners of Patients With Incurable Cancer - a Webtrial
Study type: INTERVENTIONAL
Overall status: COMPLETED
Phase: NA
Conditions: Palliative Care
Lead sponsor: Ersta Sköndal University College
Sponsor class: OTHER
First posted: 2018-09-18
Enrollment: 40
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: no
Allocation: NA
Intervention model: SINGLE_GROUP
Primary purpose: SUPPORTIVE_CARE

Brief summary: Partners of patients with advanced cancer often take a great responsibility for the patient's care. They are often unprepared for a situation where they are faced both with the role as caregivers and with the patient's impending death. This project holds significant research questions on how to implement a web-based intervention and make it easily available to all those in need and prevent negative consequences related to caregiving and the loss of a partner. The project will study the effects of using a website for support and information. Instruments for measuring outcomes will be available both on paper or electronically. To obtain data for the main outcomes, preparedness for caregiving and for death, 200 partners will be recruited and receive access to the website. Preparedness for caregiving will be measured at baseline and four weeks later (pre- and post-intervention. Further, sem-structured interviews will be performed. Preparedness for death will be measured eight weeks after the patient's death. Because current trends point towards increased levels of home-care, web-based interventions could be a way to reach more partners in a more cost-effective way.

Detailed description: Partners of patients with advanced cancer often take a great responsibility for the patient's care. They are often unprepared for a situation where they are faced both with the role as caregivers and with the patient's impending death. This lack of preparedness has been associated with psychological and physical unhealth. Interventions delivered by multi-professional palliative care teams have proved to be effective both in promoting preparedness for caregiving, death and the continued life of the bereaved. This project holds significant research questions on how to implement an intervention and make it easily available to all those in need and prevent negative consequences related to caregiving and the loss of a partner. To reach as many partners as possible, a web-based intervention has been developed on a website (närstående.se) which consists of supportive films and text as well as an online forum. The films show conversations between partners (actors) and healthcare professionals (authentic). The conversations concern potentially modifiable topics, such as medical issues and communication, that are associated with preparedness. The project will study the effects of proactive telephone calls that will be delivered to partners with the aim to support their use of the website. Instruments for measuring outcomes will be available both on paper or electronically. To obtain data for the main outcomes, preparedness for caregiving and for death, 200 partners will be recruited and get access to the website. They will also receive a telephone call with instructions on how to use the website and have access to technical support if necessary. Preparedness for caregiving will be measured at baseline and four weeks later (pre- and post-intervention). Preparedness for death will be measured eight weeks after the patient's death. The status of the modifiable topics will be measured at baseline and four weeks later. Physical and psychological health of the partner will be measured one year later. Further, semi-structured interviews will be performed with participants to explore the feasibility and acceptibility of the web intervention. The project will add significant knowledge about whether web-based support has the potential to increase preparedness and decrease negative consequences for partners of patients with advanced cancer during ongoing care and after the patient's death. Because current trends point towards increased levels of home-care, web-based interventions could be a way to reach more partners in a more cost-effective way. This project is meant to be a pilot to a larger study with a randomised controlled design.

Eligibility criteria: Inclusion Criteria:

* Being a partner of a patient with a cancer diagnose and a life expectancy of less than 12 months

Exclusion Criteria:

-

Primary outcomes:
measure: Preparedness for caregiving scale
timeFrame: 4 weeks
Secondary outcomes:
Other outcomes:
Locations:
city: Stockholm
country: Sweden
facility: Ersta Sköndal Bräcke University College
Study officials:
affiliation: Ersta Sköndal Bräcke University College
name: Anette Alvariza, PhD
role: PRINCIPAL_INVESTIGATOR
References:
citation: Alvariza A, Hager-Tibell L, Holm M, Steineck G, Kreicbergs U. Increasing preparedness for caregiving and death in family caregivers of patients with severe illness who are cared for at home - study protocol for a web-based intervention. BMC Palliat Care. 2020 Mar 17;19(1):33. doi: 10.1186/s12904-020-0530-6.