Web-based Support for Family Caregivers of Patients With Advanced Cancer

Web-based Support to Promote Preparedness for Caregiving Among Family Caregivers of Patients With Advanced Cancer

For family caregivers of patients with advanced cancer, preparedness for caregiving is crucial for maintaining health and quality of life both during care and after the death of the patient. This project contributes to earlier research funded by the Swedish Cancer Society, about an intervention that was delivered by a multi-professional team and proved to be successful in promoting preparedness. However, such interventions are often costly and logistically challenging. In addition, the Covid-19 pandemic has further significantly raised the need for digital alternatives in healthcare. As a possible solution, an evidence-based intervention, narstaende.se, has been developed consisting of recorded videos of conversations between clinicians and family caregivers (actors), linked to informational texts and a moderated chat forum. The intervention was pilot tested during 2020 and 2021, exploring feasibility, content and family caregivers' experiences. As preliminary results are promising, the intervention is taken one step further and tested as a web-based intervention in a larger scale.

Study Overview

• Status: Active, not recruiting
• Conditions: End of Life; Chronic Illness; Cancer Metastatic; Family
• Intervention / Treatment: Other: Narstaende.se

• Study Type: Interventional
• Enrollment (Actual): 204
• Phase: Not Applicable

Contacts and Locations

Study Locations

• Sweden
  • Stockholm, Sweden, 100 61
    • Marie Cederschiöld University

Participation Criteria

Eligibility Criteria

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

Description

Inclusion Criteria:

• Being a family caregiver, over 18 years of age, to a person with life-threatening illness cared for in specialized home care.

Exclusion Criteria:

• Not being able to communicate in Swedish

Study Plan

How is the study designed?

Design Details

• Primary Purpose: Supportive Care
• Allocation: Randomized
• Interventional Model: Parallel Assignment
• Masking: None (Open Label)

Number of Arms

2

Arms and Interventions

Participant Group / Arm	Intervention / Treatment
No Intervention: Control; Standard care
Experimental: Intervention; Access to web-site	Other: Narstaende.se; Web-site with supportive information, videos and chat forum targeting family caregivers of patients with life-threatening illness.

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Change in Preparedness for caregiving	Preparedness for caregiving scale (PCS)	At baseline (before intervention), change from baseline after 4-6 weeks (follow-up 1) and after 8-10 weeks (follow-up 2)

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Change in Quality of Life	The Quality of Life in Life-Threatening Illness Family caregiver version (QOLLTI-F)	At baseline (before intervention), change from baseline after 4-6 weeks (follow-up 1) and after 8-10 weeks (follow-up 2)
Change in health	RAND- 36	At baseline (before intervention), change from baseline after 4-6 weeks (follow-up 1) and after 8-10 weeks (follow-up 2)
Change in Anxiety and Depression	The Hospital Anxiety and Depression Scale (HADS)	At baseline (before intervention), change from baseline after 4-6 weeks (follow-up 1) and after 8-10 weeks (follow-up 2)
Change in pre-loss grief	Prolonged Grief-12	At baseline (before intervention), change from baseline after 4-6 weeks (follow-up 1) and after 8-10 weeks (follow-up 2)
Change in post-loss grief	Prolonged Grief-13	At baseline (before intervention), change from baseline after 4-6 weeks (follow-up 1) and after 8-10 weeks (follow-up 2)

Collaborators and Investigators

• Sponsor: Ersta Sköndal University College

Study record dates

Study Major Dates

• Study Start (Actual): September 1, 2022
• Primary Completion (Actual): December 31, 2023
• Study Completion (Estimated): December 31, 2026

Study Registration Dates

• First Submitted: February 27, 2023
• First Submitted That Met QC Criteria: March 14, 2023
• First Posted (Actual): March 27, 2023

Study Record Updates

• Last Update Posted (Actual): August 8, 2025
• Last Update Submitted That Met QC Criteria: August 5, 2025
• Last Verified: August 1, 2025

More Information

Terms related to this study

• Keywords: Family caregiver; Palliative care; Intervention; Web-based support
• Additional Relevant MeSH Terms: Pathologic Processes; Disease Attributes; Death; Chronic Disease
• Other Study ID Numbers: MarieCederschiöldUniversity

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
• product manufactured in and exported from the U.S.: No