Increasing Preparedness Through a Website

Increasing Preparedness for Caregiving, Death and Continued Life in Partners of Patients With Incurable Cancer - a Webtrial

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.

Study Overview

• Status: Completed
• Conditions: Palliative Care
• Intervention / Treatment: Other: Web-based psycho-educational support for family caregivers

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.

• Study Type: Interventional
• Enrollment (Actual): 40
• Phase: Not Applicable

Contacts and Locations

Study Locations

• Sweden
  • Stockholm, Sweden
    • Ersta Sköndal Bräcke University College

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 18 years and older (Adult, Older Adult)
• Accepts Healthy Volunteers: No
• Genders Eligible for Study: All

Description

Inclusion Criteria:

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

Exclusion Criteria:

-

Study Plan

How is the study designed?

Design Details

• Primary Purpose: Supportive Care
• Allocation: N/A
• Interventional Model: Single Group Assignment
• Masking: None (Open Label)

Number of Arms

1

Arms and Interventions

Participant Group / Arm

Intervention / Treatment

Experimental: Web-based psycho-educational support for family caregivers; Gaining access to the website (närstående.se) with supportive films and texts

Other: Web-based psycho-educational support for family caregivers; A website including potentially modifiable topics shown to be associated with preparedness. The topics cover areas such as knowledge about medical issues including symptoms and symptom relief, communication within the couple, how to spend the time before death, being partner or caregiver, planning of the moment of death and considerations of the partner's future, including psychological issues, logistical issues, economy, and the care for children.

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Preparedness for caregiving scale	Measures family caregivers' readiness to provide care in real time. It consists of eight items measured on a five point scale ranging from 0-5 where higher values indicate better preparedness. The total score ranges from 0-32. No subscales have been reported for this instrument.	4 weeks

Collaborators and Investigators

• Sponsor: Ersta Sköndal University College

Publications and helpful links

General Publications

• 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.

Study record dates

Study Major Dates

• Study Start (Actual): January 1, 2020
• Primary Completion (Actual): December 31, 2021
• Study Completion (Actual): December 31, 2022

Study Registration Dates

• First Submitted: September 12, 2018
• First Submitted That Met QC Criteria: September 16, 2018
• First Posted (Actual): September 18, 2018

Study Record Updates

• Last Update Posted (Estimate): February 16, 2023
• Last Update Submitted That Met QC Criteria: February 15, 2023
• Last Verified: February 1, 2023

More Information

Terms related to this study

• Other Study ID Numbers: ErstaSUC2

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No