Exploring the Influence of Contextual Factors and the Caregiving Process on Caregiver Burden and Quality of Life Outcomes of Heart Failure (HF) Dyads after a Hospital Discharge: A Mixed-Methods Study
Abstract
:1. Introduction
2. Purpose
3. Methods
3.1. Design
3.2. Ethics Approval
3.3. Sample
3.4. Recruitment, Enrollment, and Data Collection
3.5. Individual and Family Self-Management Theory (IFSMT)
3.6. Dyad (Patient and Caregiver) Measures
3.7. Measures for Caregiver Only
3.8. Measures for HF Patient Only
3.9. Data Analysis
4. Results
4.1. Demographic Analysis
4.1.1. Social Isolation
The following quote from one of the caregivers illustrates COVID-19 social isolation: “My social life has been a struggle with family and friends because of COVID. I want to keep him safe without the risk, so I keep company at a minimum and require everyone to wear a mask and be vaccinated to enter the house.”
4.1.2. Fear
“His last hospital stay really scared me, and I was not really sure or got an answer about his prognosis.”
4.1.3. Patient Dependence upon Caregivers
An example quotes one of the caregivers: “I am the only one that is even available. My first career was as a CNA, and I took care of his sister before she died. Both sets of parents passed away, and honestly, I am the only one. He would do it for me. We have been married for 25 years.”
4.1.4. Patient Expectations
An example quotes one of the caregivers: “Yes. He defers to me even though he enjoys some of the tasks with other family or friends, such as going to Menards. I think he would enjoy these much better if he went with his friends or male relatives, but he wants me to go in case something happens.”
4.1.5. Financial Strain
A quote from one of the caregivers illustrates perceived financial strain and potential burden: “Yes, she has not worked since 2016 and she has been in the hospital with so many visit(s) and now they have thrown around working her up for heart transplant and I am concerned with the cost of the surgery, hospital and post-transplant medications what our out of pocket and monthly costs are for us as I am the only income and we have a son still at home.”
5. Discussion
5.1. Caregiving Process
Dyad Congruence
5.2. Contextual Factors
5.3. Limitations
6. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
Appendix A. The Zarit Burden Interview
- 0: never
- 1: rarely
- 2: sometimes
- 3: quite frequently
- 4: nearly always
Question | Score | ||||
1 Do you feel that your relative asks for more help than he/she needs? | 0 | 1 | 2 | 3 | 4 |
2 Do you feel that because of the time you spend with your relative, you don’t have enough time for yourself? | 0 | 1 | 2 | 3 | 4 |
3 Do you feel stressed between caring for your relative and trying to meet other responsibilities for your family or work? | 0 | 1 | 2 | 3 | 4 |
4 Do you feel embarrassed over your relative’s behavior? | 0 | 1 | 2 | 3 | 4 |
5 Do you feel angry when you are around your relative? | 0 | 1 | 2 | 3 | 4 |
6 Do you feel that your relative currently affects our relationships with other family members or friends in a negative way? | 0 | 1 | 2 | 3 | 4 |
7 Are you afraid of what the future holds for your relative? | 0 | 1 | 2 | 3 | 4 |
8 Do you feel your relative is dependent on you? | 0 | 1 | 2 | 3 | 4 |
9 Do you feel strained when you are around your relative? | 0 | 1 | 2 | 3 | 4 |
10 Do you feel your health has suffered because of your involvement with your relative? | 0 | 1 | 2 | 3 | 4 |
11 Do you feel that you don’t have as much privacy as you would like because of your relative? | 0 | 1 | 2 | 3 | 4 |
12 Do you feel that your social life has suffered because you are caring for your relative? | 0 | 1 | 2 | 3 | 4 |
13 Do you feel uncomfortable having friends over because of your relative? | 0 | 1 | 2 | 3 | 4 |
14 Do you feel that your relative seems to expect you to take care of him/her as if you were the only one he/she could depend on? | 0 | 1 | 2 | 3 | 4 |
15 Do you feel that you don’t have enough money to take care of your relative in addition to the rest of your expenses? | 0 | 1 | 2 | 3 | 4 |
16 Do you feel that you will be unable to take care of your relative much longer? | 0 | 1 | 2 | 3 | 4 |
17 Do you feel you have lost control of your life since your relative’s illness? | 0 | 1 | 2 | 3 | 4 |
18 Do you wish you could leave the care of your relative to someone else? | 0 | 1 | 2 | 3 | 4 |
19 Do you feel uncertain about what to do about your relative? | 0 | 1 | 2 | 3 | 4 |
20 Do you feel you should be doing more for your relative? | 0 | 1 | 2 | 3 | 4 |
21 Do you feel you could do a better job caring for your relative? | 0 | 1 | 2 | 3 | 4 |
22 Overall, how burdened do you feel caring for your relative? | 0 | 1 | 2 | 3 | 4 |
- 0–21: little or no burden.
- 21–40: mild to moderate burden.
- 41–60: moderate to severe burden.
- 61–88: severe burden.
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Class | Patient Symptoms |
---|---|
I | No limitation of physical activity. Ordinary physical activity does not cause undue fatigue, palpitation, or dyspnea (shortness of breath). |
II | Slight limitation of physical activity. Comfortable at rest. Ordinary physical activity results in fatigue, palpitation, or dyspnea (shortness of breath). |
III | Marked limitation of physical activity. Comfortable at rest. Less than ordinary activity causes fatigue, palpitation, or dyspnea. |
IV | Unable to carry on any physical activity without discomfort. Symptoms of heart failure at rest. If any physical activity is undertaken, discomfort increases. |
Characteristic | HF Patient Frequency (%) | Caregiver Frequency (%) |
---|---|---|
Age | 65.76 years (SD = 13.48) | 64.77 years (SD = 14.56) |
Relationship status | Married = 8 Significant other = 2 Child of HF patient = 1 Mother of HF patient = 1 | |
Sex | ||
Male | 6 (50%) | 6 (50%) |
Female | 6 (50%) | 6 (50%) |
Race | ||
White | 11 (91%) | 11 (91%) |
African American | 1 (9%) | 1 (9%) |
Employment status | ||
Working full-time | 0 | 3 (25%) |
Working part-time | 0 | 1 (8%) |
Retired | 12 (100%) | 8 (67%) |
Highest education level | ||
Less than high school | 1 (8%) | 0 |
Graduated high school | 10 (83%) | 5 (42%) |
Some college | 1 (8%) | 4 (33%) |
College graduate | 0 | 3 (25%) |
Hours of caregiving per week | ||
Hours reported by patient | 5.54 | |
Hours reported by caregiver | 6.18 | |
Cardiovascular risk factors | Hypertension Diabetes Mellitus II Atrial Fibrillation | Hyperlipidemia Diabetes Mellitus II Arthritis Hypertension |
Charlson Co-Morbidity Index | 27% of sample with estimated 10-year survival | |
Ejection fraction % | 37.7 (SD = 15.35) | |
Disease trajectory | NYHA Class II—8% NYHA Class III—67% NYHA Class IV—25% |
Question | HF | Caregiver |
---|---|---|
What are your HF goals? | Stay out of the hospital Exercise Diet Take mediation as prescribed | Stay out of the hospital Symptom Management Diet Take medication as prescribed Exercise |
Do you think you are compliant with your medications? Is the patient compliant with his/her medications? | YES | YES |
Do you think you are compliant with your exercise? Is the patient compliant with his/her exercise regimen? | YES | YES |
Do you think you are compliant with your diet restrictions? Is the patient compliant with his/her diet restrictions? | YES | YES |
Do you think you manage your heart failure symptoms? Does the HF patient manage his/her heart failure symptoms? | YES | YES |
Since discharge, have caregiving tasks increased? | YES | YES |
Have caregiving hours increased? | YES | YES |
Has caregiving become burdensome? | YES | YES |
What has been the most difficult since discharge? (Caregivers only) | Change in medications Additional outpatient appointments Adjusting to higher level of care |
Question | Never | Rarely | Sometimes | Quite Frequently | Nearly Always |
---|---|---|---|---|---|
1 | 7 | 0 | 5 | 0 | 0 |
2 | 4 | 5 | 3 | 0 | 0 |
3 | 4 | 2 | 5 | 0 | 1 |
4 | 7 | 2 | 1 | 2 | 0 |
5 | 9 | 1 | 2 | 0 | 0 |
6 | 9 | 2 | 1 | 0 | 0 |
7 | 2 | 4 | 2 | 3 | 1 |
8 | 3 | 1 | 4 | 2 | 2 |
9 | 9 | 1 | 1 | 1 | 0 |
10 | 7 | 3 | 1 | 1 | 0 |
11 | 5 | 3 | 2 | 2 | |
12 | 8 | 2 | 1 | 1 | 0 |
13 | 9 | 1 | 1 | 1 | 0 |
14 | 4 | 2 | 2 | 3 | 1 |
15 | 5 | 3 | 1 | 0 | 3 |
16 | 8 | 3 | 1 | 0 | 0 |
17 | 8 | 3 | 1 | 0 | 0 |
18 | 7 | 3 | 2 | 0 | 0 |
19 | 9 | 2 | 1 | 0 | 0 |
20 | 8 | 1 | 2 | 1 | 0 |
21 | 7 | 1 | 3 | 1 | 0 |
22 | 7 | 1 | 4 | 0 | 0 |
Physical Component Score | Mental Component Score | |
---|---|---|
HF patients | 32.24 (SD + 8.87) | 53.85 (SD + 10.96) |
Caregivers | 47.52 (SD + 7.67) | 52.8 (SD + 8.46) |
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Oliver, T.L.; Hetland, B.; Schmaderer, M.; Zolty, R.; Wichman, C.; Pozehl, B. Exploring the Influence of Contextual Factors and the Caregiving Process on Caregiver Burden and Quality of Life Outcomes of Heart Failure (HF) Dyads after a Hospital Discharge: A Mixed-Methods Study. J. Clin. Med. 2024, 13, 4797. https://doi.org/10.3390/jcm13164797
Oliver TL, Hetland B, Schmaderer M, Zolty R, Wichman C, Pozehl B. Exploring the Influence of Contextual Factors and the Caregiving Process on Caregiver Burden and Quality of Life Outcomes of Heart Failure (HF) Dyads after a Hospital Discharge: A Mixed-Methods Study. Journal of Clinical Medicine. 2024; 13(16):4797. https://doi.org/10.3390/jcm13164797
Chicago/Turabian StyleOliver, Tamara L., Breanna Hetland, Myra Schmaderer, Ronald Zolty, Christopher Wichman, and Bunny Pozehl. 2024. "Exploring the Influence of Contextual Factors and the Caregiving Process on Caregiver Burden and Quality of Life Outcomes of Heart Failure (HF) Dyads after a Hospital Discharge: A Mixed-Methods Study" Journal of Clinical Medicine 13, no. 16: 4797. https://doi.org/10.3390/jcm13164797