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This study is a pilot test of an intervention to train family caregivers of home hospice patients about recognizing and treating shortness of breath.
Shortness of breath is a prevalent symptom causing distress among patients at the end of life. In home hospice care family caregivers are expected to assist their family member with symptom management. This is often accomplished with little or no training.
The investigators have developed a bundle of training materials targeted for family caregivers of home hospice patients at risk for shortness of breath. The investigators will pilot test the intervention in this clinical trial. A future randomized clinical trial is planned and the evidence from this pilot will enhance the planning of that future trial.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Intervention | Experimental | all participants will receive the training |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Shortness of breath recognition and treatment | Behavioral | Hospice registered nurses will train family caregivers about how to recognize patient shortness of breath. This training will employ a guided learning tool the Respiratory Distress Observation Scale-Family. Training will be done with a DVD and return demonstration of the skills using the patient. In addition, the family will be taught the bundle of evidence-based interventions to treat shortness of breath. |
| Measure | Description | Time Frame |
|---|---|---|
| Change in patient respiratory comfort | The Respiratory Distress Observation Scale will be used to measure patient respiratory comfort at enrollment (baseline), twice each week during the study until patient death. | Baseline and up to four weeks until patient death |
| Measure | Description | Time Frame |
|---|---|---|
| Family caregiver burden index | The Modified Caregiver Strain Index | Baseline and participants will be followed for an average of 4 weeks until date of death |
| Measure | Description | Time Frame |
|---|---|---|
| Family caregiver stress as measured by Salivary cortisol | Salivary cortisol | Baseline and participants will be followed for an average of four weeks to end at time of death. |
| Family anxiety questionnaire |
Inclusion Criteria:
Exclusion Criteria:
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| Name | Affiliation | Role |
|---|---|---|
| Margaret L. Campbell, PhD | Wayne State University | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Angela Hospice | Livonia | Michigan | United States |
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| ID | Term |
|---|---|
| D004417 | Dyspnea |
| ID | Term |
|---|---|
| D012120 | Respiration Disorders |
| D012140 | Respiratory Tract Diseases |
| D012818 | Signs and Symptoms, Respiratory |
| D012816 | Signs and Symptoms |
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| ID | Term |
|---|---|
| D013812 | Therapeutics |
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|
Promis anxiety Short form
| Baseline and participants will be followed for an average of four weeks to end at time of death |
| Family depression questionnaire | Baseline and participants will be followed for an average of four weeks to end at time of death |
| D013568 | Pathological Conditions, Signs and Symptoms |