FamilyNCT05785494
Web-based Support for Family Caregivers of Patients With Advanced Cancer
A study testing Narstaende.se in people with Family and End of Life, run by Ersta Sköndal University College at 1 site in Sweden.
Trial summary
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. Read more about this study
- Who is it for?
- Ages 18 years and older
- Conditions the study is for
- Family, End of Life, Cancer Metastatic
- What is being tested?
- Narstaende.se
- Could I receive a placebo?
- No, everyone receives an active treatment
- How many people
- 204 participants
- Where
- 1 siteSweden
- Study dates
- 1 Sep 2022to 31 Dec 2026
- Phase
- Interventional
- Are there results?
- Not yet: the study is under way
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 18 years and older
- All sexes
- No healthy volunteers
- Adult, Older adult
Who may be able to join
- Being a family caregiver, over 18 years of age, to a person with life-threatening illness cared for in specialized home care.
Who cannot join
- Not being able to communicate in Swedish
Trial locations and contacts
1 site in 1 country.
About this study
Official title: 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.
- Conditions
- Family, End of Life, Cancer Metastatic, Chronic Illness
- Being tested
- Narstaende.se
- Keywords
- Palliative care, Family caregiver, Web-based support, Intervention
- Medical subject headings
- Death, Neoplasm Metastasis, Chronic Disease
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
Narstaende.seOther
Web-site with supportive information, videos and chat forum targeting family caregivers of patients with life-threatening illness.
| Study group | Role | What they receive |
|---|---|---|
| Intervention | Experimental | Access to web-site Receives: Other: Narstaende.se |
| Control | No intervention | Standard care |
What is being measured
The primary outcome is the main question the study is designed to answer.
Change in Preparedness for caregiving
Preparedness for caregiving scale (PCS)
Measured: At baseline (before intervention), change from baseline after 4-6 weeks (follow-up 1) and after 8-10 weeks (follow-up 2)
Secondary outcomes (5)
Change in Quality of Life
The Quality of Life in Life-Threatening Illness Family caregiver version (QOLLTI-F)
Measured: 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
Measured: 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)
Measured: 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
Measured: 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
Measured: At baseline (before intervention), change from baseline after 4-6 weeks (follow-up 1) and after 8-10 weeks (follow-up 2)
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted27 Mar 2023
- Study start1 Sep 2022
- Primary completion31 Dec 2023
- Study completion31 Dec 2026 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Publications (2)Papers the sponsor has linked to this study.
- Other trials for FamilyStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Interventional
- Phase
- Phase N/A
- Primary purpose
- Supportive care
- Allocation
- Randomised
- Intervention model
- Parallel groups
- Masking
- None (open label)
- Enrolment
- 204 participants (actual)
Sponsor and investigators
- Lead sponsor
- Ersta Sköndal University College
- Sponsor type
- University, hospital or other
- Responsible party
- Principal investigator, Anette Alvariza, Ersta Sköndal University College
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT05785494
- Sponsor's protocol ID
- MarieCederschiöldUniversity
- Status last verified
- Aug 2025
- First submitted
- 27 Feb 2023
- Last updated
- 8 Aug 2025
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- No
Publications
Doveson S, Wallin V, Kreicbergs U, Alvariza A. Expectations and motives for nominating a family caregiver to partake in a web-based psychoeducational intervention: perspectives of patients with advanced illness in palliative care. Support Care Cancer. 2026 Aug 20;34(9):880. doi: 10.1007/s00520-026-11105-y.
PubMed 42624933Bauman C, Wallin V, Doveson S, Furst P, Hudson P, Kreicbergs U, Alvariza A. The family caregiver-targeted web-based intervention "narstaende.se" facilitated everyday life for couples facing life-threatening illness: A qualitative study. Palliat Med. 2025 May;39(5):574-583. doi: 10.1177/02692163251327893. Epub 2025 Apr 12.
PubMed 40219770
Study at a glance
From the registry record, last updated by the sponsor on 8 Aug 2025. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Web-based Support to Promote Preparedness for Caregiving Among Family Caregivers of Patients With Advanced Cancer
- ClinicalTrials.gov ID
- NCT05785494
- Acronym / sponsor ID
- MarieCederschiöldUniversity
- Conditions
- Family, End of Life, Cancer Metastatic, Chronic Illness
- Keywords
- Palliative care, Family caregiver, Web-based support, Intervention
- Study type
- Interventional
- Recruitment status
- Active, not recruiting
- Enrolment
- 204 participants (actual)
- Lead sponsor
- Ersta Sköndal University CollegeUniversity, hospital or other
- Study start
- 1 Sep 2022 (actual)
- Primary completion
- 31 Dec 2023 (actual)
- Study completion
- 31 Dec 2026 (estimated)
- First posted
- 27 Mar 2023 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
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 design
- Primary purpose
- Supportive care
- Allocation
- Randomised
- Intervention model
- Parallel groups
- Masking
- None (open label)
- Number of arms
- 2
| Arm | Type | Receives |
|---|---|---|
| Intervention | Experimental | Other: Narstaende.seAccess to web-site |
| Control | No intervention | –Standard care |
Who may qualify
- Ages
- 18 years and older
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Adult, Older adult
Key inclusion criteria (1 listed)
- Being a family caregiver, over 18 years of age, to a person with life-threatening illness cared for in specialized home care.
Key exclusion criteria (1 listed)
- Not being able to communicate in Swedish
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| Narstaende.seWeb-site with supportive information, videos and chat forum targeting family caregivers of patients with life-threatening illness. | Other | Intervention |
Primary outcome
Change in Preparedness for caregiving
Time frame: At baseline (before intervention), change from baseline after 4-6 weeks (follow-up 1) and after 8-10 weeks (follow-up 2)
Preparedness for caregiving scale (PCS)
5 secondary outcomes
Change in Quality of Life
Time frame: 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
Time frame: 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
Time frame: 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
Time frame: 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
Time frame: At baseline (before intervention), change from baseline after 4-6 weeks (follow-up 1) and after 8-10 weeks (follow-up 2)
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 8 Aug 2025.
- Derived from this study: PubMed 42624933Doveson S, Wallin V, Kreicbergs U, Alvariza A. Expectations and motives for nominating a family caregiver to partake in a web-based psychoeducational intervention: perspectives of patients with advanced illness in palliative care. Support Care Cancer. 2026 Aug 20;34(9):880. doi: 10.1007/s00520-026-11105-y.
- Derived from this study: PubMed 40219770Bauman C, Wallin V, Doveson S, Furst P, Hudson P, Kreicbergs U, Alvariza A. The family caregiver-targeted web-based intervention "narstaende.se" facilitated everyday life for couples facing life-threatening illness: A qualitative study. Palliat Med. 2025 May;39(5):574-583. doi: 10.1177/02692163251327893. Epub 2025 Apr 12.
- Individual participant dataSharing planned: No
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
The record lists no contact. Use the official record to reach the sponsor.
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
A study testing Narstaende.se in people with Family and End of Life, run by Ersta Sköndal University College at 1 site in Sweden.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 1 inclusion and 1 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: under way, not looking for participants, as of the sponsor's last update on 8 Aug 2025. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in Sweden. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Change in Preparedness for caregiving (time frame: At baseline (before intervention), change from baseline after 4-6 weeks (follow-up 1) and after 8-10 weeks (follow-up 2)). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
On the ClinicalTrials.gov record for NCT05785494, which also lists 2 linked publications.
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 8 Aug 2025.