Dyspnea
Conditions
Brief summary
This study is a pilot test of an intervention to train family caregivers of home hospice patients about recognizing and treating shortness of breath.
Detailed description
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.
Interventions
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.
Sponsors
Study design
Eligibility
Inclusion criteria
* Patient in home hospice care with an estimated survival of 3-4 weeks, at risk for dyspnea secondary to lung cancer, COPD, or heart failure. * Family caregiver in patient's home must speak and read English.
Exclusion criteria
* Patients with bulbar ALS or quadriplegia.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Change in patient respiratory comfort | Baseline and up to four weeks until patient death | 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. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Family caregiver burden index | Baseline and participants will be followed for an average of 4 weeks until date of death | The Modified Caregiver Strain Index |
Other
| Measure | Time frame | Description |
|---|---|---|
| Family caregiver stress as measured by Salivary cortisol | Baseline and participants will be followed for an average of four weeks to end at time of death. | Salivary cortisol |
| Family anxiety questionnaire | Baseline and participants will be followed for an average of four weeks to end at time of death | Promis anxiety Short form |
| Family depression questionnaire | Baseline and participants will be followed for an average of four weeks to end at time of death | — |
Countries
United States