Increasing Preparedness Through a Website

NCT03676283 | Completed

• 1 other identifier: ErstaSUC2
• Study Type: interventional
• Target: 40
• Locations: 1 country
• Sites: 1

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.

Conditions

Palliative Care

Outcome Measures

Primary Outcomes (1)

• 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

Study Arms (1)

Web-based psycho-educational support for family caregivers

EXPERIMENTAL

Gaining access to the website (närstående.se) with supportive films and texts

Other: Web-based psycho-educational support for family caregivers

Interventions

Web-based psycho-educational support for family caregivers OTHER

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.

Web-based psycho-educational support for family caregivers

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

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

Sponsors & Collaborators

• Ersta Sköndal University College: lead

Study Sites (1)

Ersta Sköndal Bräcke University College

Stockholm, Sweden

Location

Related Publications (2)

• Doveson S, Tibell LH, Arestedt K, Holm M, Kreicbergs U, Alvariza A, Wallin V. Communication about incurable illness and remaining life between spouses and patients with incurable illness receiving specialized home care: effects of a family caregiver-targeted web-based psycho-educational intervention. BMC Palliat Care. 2024 Dec 16;23(1):282. doi: 10.1186/s12904-024-01614-0.

  PMID: 39681862 DERIVED

• 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.

  PMID: 32183803 DERIVED

MeSH Terms

Interventions

Caregivers

Intervention Hierarchy (Ancestors)

Health Personnel; Health Care Facilities Workforce and Services

Study Officials

• Anette Alvariza, PhD

  Ersta Sköndal Bräcke University College

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: NA
• Masking: NONE
• Purpose: SUPPORTIVE CARE
• Intervention Model: SINGLE GROUP
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Associate professor

Study Record Dates

• First Submitted: September 12, 2018
• First Posted: September 18, 2018
• Study Start: January 1, 2020
• Primary Completion: December 31, 2021
• Study Completion: December 31, 2022
• Last Updated: February 16, 2023

Record last verified: 2023-02

Data Sharing

• IPD Sharing: Will not share

Locations

SE (1)