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

Study Overview
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Brief Summary
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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.

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

Conditions
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Family, End of Life, Cancer Metastatic, Chronic Illness

Intervention / Treatment
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* Other: Narstaende.se


Participation Criteria
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Eligibility Criteria
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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

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Design Details

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


Arms and Interventions

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

What is the study measuring?
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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) | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Palliative care, Family caregiver, Web-based support, Intervention