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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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Intervention | Experimental | Access to web-site |
|
| Control | No Intervention | Standard care |
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Narstaende.se | Other | Web-site with supportive information, videos and chat forum targeting family caregivers of patients with life-threatening illness. |
|
| 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) |
| 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 |
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Inclusion Criteria:
Exclusion Criteria:
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Marie Cederschiöld University | Stockholm | 100 61 | Sweden |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 40219770 | Derived | Bauman 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. |
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| ID | Term |
|---|---|
| D003643 | Death |
| D009362 | Neoplasm Metastasis |
| D002908 | Chronic Disease |
| ID | Term |
|---|---|
| D010335 | Pathologic Processes |
| D013568 | Pathological Conditions, Signs and Symptoms |
| D009385 | Neoplastic Processes |
| D009369 | Neoplasms |
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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) |
| D020969 | Disease Attributes |