Cancer Metastatic, Chronic Illness, End of Life, Family
Conditions
Keywords
Palliative care, Family caregiver, Web-based support, Intervention
Brief 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. 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.
Interventions
OTHERNarstaende.se
Web-site with supportive information, videos and chat forum targeting family caregivers of patients with life-threatening illness.
Sponsors
Ersta Sköndal University College
Study design
Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
SUPPORTIVE_CARE
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Change in Preparedness for caregiving | 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) |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Change in Quality of Life | At baseline (before intervention), change from baseline after 4-6 weeks (follow-up 1) and after 8-10 weeks (follow-up 2) | The Quality of Life in Life-Threatening Illness Family caregiver version (QOLLTI-F) |
| Change in health | At baseline (before intervention), change from baseline after 4-6 weeks (follow-up 1) and after 8-10 weeks (follow-up 2) | RAND- 36 |
| Change in Anxiety and Depression | At baseline (before intervention), change from baseline after 4-6 weeks (follow-up 1) and after 8-10 weeks (follow-up 2) | The Hospital Anxiety and Depression Scale (HADS) |
| Change in pre-loss grief | At baseline (before intervention), change from baseline after 4-6 weeks (follow-up 1) and after 8-10 weeks (follow-up 2) | Prolonged Grief-12 |
| Change in post-loss grief | At baseline (before intervention), change from baseline after 4-6 weeks (follow-up 1) and after 8-10 weeks (follow-up 2) | Prolonged Grief-13 |
Countries
Sweden
Outcome results
None listed