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TitleThe Lived Experience of African American Caregivers Caring for Adult African American Patients
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                            University of Connecticut
[email protected]
	11-5-2014
The Lived Experience of African American Caregivers Caring for Adult African American Patients with Heart Failure: A Phenomenological Study
	Heather Marie Hamilton
		Recommended Citation
Microsoft Word - RevisedDissertation Heather Hamilton Graduateschool.docx
                        
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Page 1

University of Connecticut
[email protected]

Doctoral Dissertations University of Connecticut Graduate School

11-5-2014

The Lived Experience of African American
Caregivers Caring for Adult African American
Patients with Heart Failure: A Phenomenological
Study
Heather Marie Hamilton
University of Connecticut - Storrs, [email protected]

Follow this and additional works at: https://opencommons.uconn.edu/dissertations

Recommended Citation
Hamilton, Heather Marie, "The Lived Experience of African American Caregivers Caring for Adult African American Patients with
Heart Failure: A Phenomenological Study" (2014). Doctoral Dissertations. 631.
https://opencommons.uconn.edu/dissertations/631

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Page 2

The Lived Experience of African American Caregivers Caring for Adult African American Patients

with Heart Failure: A Phenomenological Study

Heather Hamilton, PhD, RN

University of Connecticut, 2014



Abstract

An estimated 5.7 million people in the United States are currently living with heart failure

(HF); this population is expected to double in the next 25 years due to advances in modern

medicine that have decreased the mortality rates for cardiovascular diseases. Because of the

complex regimen required, the help of family members, friends or neighbors is crucial to

adequately managing symptoms and preventing hospital readmissions. Descriptive phenomenology

underpins this study. Formal interviews were used to explore African American caregivers’ lived

experience in caring for African American heart failure patients. Snowball sampling and purposive

sampling yielded a total of 10 interviewed participants, which achieved data saturation.

The interviews were analyzed using Colaizzi’s steps. Seven themes emerged:

(1) Juggling act, (2) Layers of support, (3) Realization of self-neglect, (4) Experiencing the

“blues,” (5) Connecting with healthcare provider, (6) Unmet financial needs and (7) Perception of

non-adherence. Thorough information regarding the experience of African American caregivers of

heart failure patients obtained through this research will enhance the resources available to

healthcare professionals for delivering culturally competent support to African American

caregivers, thereby improving quality of life for heart failure patients and their caregivers.



Key words: Heart Failure, African Americans, Caregivers, and Phenomenology

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Theme 1: Juggling Act

Each caregiver interviewed spoke about their personal life and the life of the heart

failure patient as a juggling act. Some were responsible for self, husband, children, work,

and the needs (both ADLs and IADLs) of the heart failure patient. One participant spoke

about her health issues and the need to continue caring for her mother. When she finally

took some time to tend to her own health and visited the doctor, she was given an

unexpected diagnosis of breast cancer. She said, “They found a calcification in my breast.

Okay, and so, I mean, that knocked me down. I never told my mom about it, though.”

Despite receiving this diagnosis, undergoing surgery to remove the lump and subsequently

going for radiation, she had to continue caring for her mother. She stated, “Now think

about this: have the radiation in the morning, come home and eat something and get in the

car and go to take care of her.”

Although this interviewee was receiving radiation treatment, she still had to

provide care for her mother, since her mother was unable to care for herself and had no one

but her daughter to care for her. Despite her feelings, this interviewee had to perform her

mother’s ADLs and IADLs, because her mother was unable to do any activity because of

the severity of her heart failure.

Another participant spoke about working and caring for his dad. He said:

“And they came and had to rush him to the hospital. I also had to go with him to the

hospital, make sure that he ... that they stabilized him and then I had to leave him there

and then rush to go to work and then immediately after work, I had to rush back to the

hospital to make sure he was okay.”

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He also said, “I did make several mistakes on my job because I was so worried about him

back here.

This participant described the effect of rushing. For a period of time he was rushing

to work and after work he was rushing home to his dad. While at work he worried about

his dad and when he was home with his dad he worried about mistakes made on the job.

This juggling act affected his thought process. Being responsible for too many things at the

same time can affect a person ability to concentrate, thus undermine their ability to

perform at optimal level. Increased responsibility with increasing time constraints can lead

to caregivers’ burnout. It also can lead to emotional neglect of the caregiver’s other family

members and friends. This caregiver also spoke about neglecting his wife to care for his

father. He had no other choice: that was his father and he had to care for him.

Still another interview subject spoke about leaving work to drive to another state

after hearing that her mother was back in the hospital. She said: “And then there were

some times when I'd come home from work and have to get in my car and drive to see my

mother because something was going on with them [ both her mother and father were

diagnosed with heart failure]or someone had to go to the hospital. I can very well

remember going in for a conference and having my sister call me and say that my mom

had to be hospitalized because she had congestive heart failure and that she couldn't

breathe and they didn't know whether she would make it through the night.”

In speaking about her role as a caregiver, one interviewee provided a vivid description of

an event that shed some light on the daily sacrifices that caregivers make to ensure that

heart failure patients’ meets are met. She stated: “I got someone to come down to sit with

her and I said, "Mom, I'm going across the street to Subway." Well, I was walking and I

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....................................................................................14

Spicy Okra
....................................................................................................
15

Main Dishes
Crispy Oven-Fried Chicken
....................................................................... 18 Mouth-
Watering Oven-Fried Fish
............................................................ 19 Finger-Licking
Curried Chicken ............................................................... 20
Poached Salmon
...........................................................................................21
Jamaican Jerk
Chicken................................................................................ 22
Baked Pork Chops
....................................................................................... 23

Jumpin’
Jambalaya...................................................................................
... 24 Scrumptious Meat Loaf
.............................................................................. 25

Spicy Southern Barbecued
Chicken.......................................................... 26

Desserts
1-2-3 Peach Cobbler
.................................................................................... 28

Mock-Southern Sweet Potato Pie
.............................................................. 29

Southern Banana Pudding

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......................................................................... 30

Summer Breeze Smoothie
...........................................................................31

Tangy Fruit Salad
........................................................................................ 32

Recipe Substitutions for Heart ���Healthy
Cooking.......................................................................... 34

Is It Done Yet? Temperature Rules ���for Safe
Cooking ......................................................................... 36




Adapted fromNHLBI (2008)(p.1-3)Visit
https://www.nhlbi.nih.gov/health/public/heart/other/chdblack/cooking.pdf for all these recipes

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