Support for the Caregiver
Loretta A. Williams, PhD, APRN‐CNS, OCN®, AOCN®
University of Texas MD Anderson Cancer Center
Department of Symptom Research
Assistant Professor
Importance
• Family (informal) caregiving Unpaid assistance, usually provided by family members, friends, or neighbors, to persons with health problems
• 2009 caregiving value in US ‐ ~ $450 billion
$600
Estimated Value in Billions
$400
$200
$0
2003
2004
2005
2006
2007
2008
2009
Year
• Informal caregiving is an essential component of cancer care
Feinberg et al., 2011. AARP Public Policy Institute.
Research Question
What are the caregiver dynamics that energize informal caregivers of cancer patients? Predicted Caregiver Energy Sources
• Commitment
• Expectations
• Negotiation
Research Design
• Qualitative descriptive exploratory study
• Collect data with story dialogue
• Analyze data by descriptive exploratory method Methods
• Sample – 40 caregivers
• Data Collection – Story Theory (Smith & Liehr, 2003)
– One interview
• Dialogue Guide
• Story Path
– Contextual Information
• Caregiver Demographic Information
• SF‐36 Health Status Form
• Patient Demographic and Clinical Information
• Data Analysis –Descriptive Exploratory (Parse, Coyne, & Smith, 1985)
– Identify themes and elements
– Descriptive statistics to analyze contextual information
Results: Caregiver Descriptive Data Characteristic
Age (Years)
Years of Education
Characteristic
Gender
Male
Female
Ethnicity
African-American
Caucasian
Hispanic
Marital Status
Married
Not Married
Relationship to Patient
Spouse
Parent
Child
Other
Mean
53.4
14.3
N
S.D.
14.1
2.4
%
14
26
35.0
65.0
2
33
5
5.0
82.5
12.5
37
3
92.5
7.5
30
4
3
3
75.0
10.0
7.5
7.5
Results: Caregiver SF‐36 Scores
Scale
N
Mean
SD
Physical Functioning
Role Physical
Bodily Pain
General Health
Vitality
Social Functioning
Role Emotional
Mental Health
Physical Component
Summary
Mental Component
Summary
39
40
39
40
40
39
40
40
38
84.49
79.38
70.72
78.38
60.63
78.21
68.33
73.20
52.46
24.73
36.20
23.77
20.72
18.71
23.07
43.33
17.19
10.10
U. S. Population
Means
82.97
77.93
70.23
70.10
57.0
83.56
83.10
75.22
50.00
38
47.70
10.70
50.00
Results
Informal Caregiving Dynamics
• Commitment
– Self Care • Managing Expectations
– New Insight
• Role Negotiation
– Role Support
Commitment
Elements •
•
•
•
Enduring Responsibility Making the Patient Priority
Supportive Presence
Self‐affirming, Loving Connection Enduring Responsibility
I said to him, “I will do anything you want to do. I will go anywhere in the world. . . . But I will not sit here and do nothing.” . . . And he said, “Well, Honey, we can’t go down there and stay thirty days.” And I said, “I can go down there and stay a lifetime if that’s what it takes. But we need to do something.” And that’s when I figure I became his caregiver, right there on the spot.
64‐year‐old wife
Making the Patient Priority
I found my normal life slipping away, but not in a complaining way, just that’s what was happening. . . . I don’t know what a normal life is right now. . . . My focus is him.
65‐year‐old wife
Supportive Presence
I guess one of the things that has bothered me is the fact that my wife is sick, and I truly, I can’t do anything to make her well. . . . But I want to do all that I can do. . . . I want to keep my wife positive. When she’s down, I try to make her laugh. . . . When she’s feeling lonely, I try to speak with her. . . . Those are the things that I can do to try to have a pronounced positive effect on the outcome of her condition. 56‐year‐old husband
Self‐Affirming, Loving Connection
It changes your relationship from the standpoint it makes you stronger and more together, especially when your loved one struggles. . . . There really aren’t any secrets. . . . There’s just an openness and a togetherness.
58‐year‐old husband
Maintaining Commitment
Self Care
Elements
•
•
•
•
Getting Away from It
Letting It Out
Supportive Physical Environment
Cultivating Healthy Habits
Getting Away from It
This time we had to get an apartment. And we feel this time that it really is much better because we leave the facility here completely. We go to an apartment where there is children around. . . . They are outside, you can hear them, there is regular people. 64‐year‐old mother caring for daughter
Letting It Out
He did have a lot of down, down days. We certainly had disappointments. . . . We called those our bumps in the road. . . . I am not a creative person. But one night at home all of this kept playing in my mind. And I just felt so led, and I got up and wrote a poem about a bump in the road. 66‐year‐old mother caring for son
Supportive Physical Environment
They have taken care of me just like they’ve taken care of him. I have had room service, you know. I have my Internet, that has been wonderful to have that access in there, that has been an outlet for me. 51‐year‐old wife
Cultivating Healthy Habits
I have to exercise. . . . I’m a fanatic about not wanting to gain weight, and I did gain weight last year when he went through all of this. . . . I think it helps the stress to workout, and. . . I find that helpful. The exercise really does do the work. 52‐year‐old mother caring for son
Expectation Management Elements
•
•
•
•
•
Envisioning Tomorrow
Getting Back to Normal
Taking One Day at a Time Gauging Behavior Understanding Treatment Twists and Turns
Envisioning Tomorrow
You saw what might be your future in a little plastic bag. And it’s just not possible to fit that much in that plastic bag. But it really is possible. . . . And it was just remarkable to be able to look at that little bag and say, “This is what is going to keep us going, right here.” . . . Everything is all encompassing in that one moment. And you think of all of the things that have been, and you think of all of the things that might be.
56‐year‐old husband Getting Back to Normal
I would hope that he’s going to be healthy, that he’s going to stay in remission from this. . . . We don’t have great hopes any more. We just want to do some things that are normal, and that’s really kind of what we are looking at. 32‐year‐old wife
Taking One Day at a Time
I don’t like the future. . . .When he went into remission and stayed there for several months, I tried to go back to normal and have hopes and dreams for the future. And then he relapsed. . . . After that I thought, “No more future for me. I’m not going to look that far into the future because we just don’t know with this kind of an illness what is going to happen.”
32‐year‐old wife
Gauging Behavior
She has been very hateful to me during this time. I take it. I don’t argue with her . . . because it is not her. That’s not her being like that, I know her, we’ve been married over 40 years. 60‐year‐old husband
Reconciling Treatment Twists and Turns
The cord blood was supposed to engraft in approximately 20 to 30 days. We kept waiting and we kept waiting. And it never did engraft. That was a real disappointment. . . . It just wasn’t adequate.
66‐year‐old mother caring for son
Managing Expectations Gaining New Insights
Elements
• Experiencing Personal Growth
• Leaning on the Lord • Recognizing Positive Outcomes Experiencing Personal Growth
It helps you to learn more about yourself and what your relationship is with the people that you associate with on a day to day, and month to month, and year to year basis. Because they respond in ways that you didn’t anticipate. . . . And you take a lot of those relationships . . . for granted. So it’s been a learning experience in many different ways.
56‐year‐old husband Leaning on the Lord
We’re just leaning on the Lord, because He’s all we have. . . . The doctors are doing their part, but they can’t do everything. 60‐year‐old wife
Recognizing Positive Outcomes
Once he turned the corner, now I’m getting back to my husband, I felt a lightness coming through, back to me. And I‘ve been fine the last four or five days. . . . A lot of it has to do with the fact that it’s behind us, that he seems to be doing all right so far, knock on wood. 65‐year‐old wife
Role Negotiation
Elements
•
•
•
•
•
Appropriate Pushing
Getting a Handle on It
Sharing Responsibilities
Attending to Patient Voice
Vigilant Bridging
Appropriate Pushing
I said to him last night, “Now that you’re no longer on the heavy medications, you’re going to have to start taking some responsibility. . . . Not all at once, because I know you’re still resting, and you’re tired, and you’ve been through a horrible trauma and ordeal. But . . . it can’t always be (me), because I’ve got to let go somewhat.” 65‐year‐old wife
Getting a Handle on It
The first time I walked into the hospital, and it said cancer center, I thought, “This happens to everybody but us.” And it’s like somebody puts a hot hand in the middle of your stomach and rips your guts out. . . . Once you walk into the clinic the first time, your life changes. . . . (You) try to understand . . . and to become as informed as you possibly can. . . . I want to be able to understand what’s going on and be able to support her from a rational standpoint and have rational and reasonable goals and expectations. . . . I think it’s important from a caregiver’s perspective. You can’t sit on the side lines, you have got to be involved.
58‐year‐old husband
Sharing Responsibilities
She needs 24‐hour care, watching. With having smaller children, that’s a problem because I need to be at home, homework, getting people ready for school. So that’s where your spouse or someone else in your family . . . can stay . . . until (you) get there.
33‐year‐old daughter‐in‐law
Attending to Patient Voice
I have learned, a big difference from last year to this year, . . . as far as the eating, sleeping. I just really go along with her. I used to say, “Oh, you have to eat. They say you have to eat.” It doesn’t work because . . . they get so sick. Now I just wait. And she will say to me, “Oh, I’m hungry. I would like so and so.” And I will then prepare it for her. . . . I listen to her.
64‐year‐old mother caring for daughter
Vigilant Bridging
As of right now, the insurance company isn’t letting us totally search for a donor. We have to be restaged, which will take place on Tuesday. Then (we’ll have) the usual play with the insurance company. I do have the medical director’s direct line, which I managed to weasel last time. So I imagine a few calls to her (will help). When she picks up, she gets very annoyed when somebody calls her office. So the last two times that I did it, the services we needed were approved within 20 minutes of my phone call to her.
35‐year‐old husband
Supporting Role Negotiation
Role Support
Elements
• Encountering Competent, Compassionate Care
• Finding Support for Other Responsibilities
• Knowing Others Care
• Meeting Financial Obligations
• Receiving Helpful Information
Encountering Competent, Compassionate Care
I have seen that all the nurses there have been so good, and they’re so attentive. And she has been taken care of very well. . . . I was pleased with that, and it eased my fear or anxiety.
71‐year‐old mother caring for daughter
Finding Support for Other Responsibilities
My husband has just totally surprised me. . . . He has totally changed. . . . He’s a Mr. Mom. . . . He has come around full circle. He does so much in the house, and he’s so proud. When I come home on the weekends, . . . the kitchen’s clean, the house (is clean). . . . He has done a great job.
52‐year‐old mother caring for son
Knowing Others Care I found my way to a church. We had friends back home that helped us meet friends out here. So we immediately started with the church here and have made some of the closest friends we’ll probably ever have. They’ve just become our family. So we immediately were blessed with friends that nurtured us and still do. 66‐year‐old mother caring for son
Meeting Financial Obligations
They (the people at our church) . . . did a fundraiser and raised a bunch of money for us to help us. . . . And that was a relief (to know) you had that extra money. And it’s just about the right amount to cover the COBRA payments for probably the whole time we are going to be out here. 56‐year‐old wife
Receiving Helpful Information
That can definitely affect your caregiving role if you don’t have the community support, or you don’t know how to find community support. . . . Some hospitals I’ve found are better than others in helping you to know what supports are out there, giving you information. So if you don’t have a social worker or someone that is telling you, directing you in the right direction, it’s very difficult to access appropriate resources. And that definitely can be a benefit to you as a caregiver. 32‐year‐old wife
Informal Caregiving Dynamics
Informal caregiving dynamics are the commitment, expectation management, and role negotiation supported by self care, new insight, and role support that move an informal caregiving relationship along an illness trajectory.
Implications for Practice
• Recognize the significant commitment and sacrifices of family caregivers in providing care.
• Acknowledge the unique contribution that family caregivers make to the patients’ care.
• Give family caregivers the opportunity to tell or write their stories to assist them in resolving caregiving challenges.
• Provide caregivers with clear, concise, realistic information about what to expect and how to provide care.
• Provide caregivers with information and opportunities for self‐care activities.
Future Research
• Focus on the patient’s experience of the caregiving relationship. • Continue to est theory with caregivers of other types of patients.
• Explore interventions suggested by model to improve caregiving outcomes for caregiver and patient.
Further Use and Development
• HSCT caregiver support program at M. D. Anderson Cancer Center
• Research with caregivers of primary brain tumor patients at M. D. Anderson Cancer Center
• Identification and intervention for high‐risk caregivers at City of Hope
References
Parse, R. R., Coyne, A. B., & Smith, M. J. (1985). The Descriptive Method. In Nursing research: Qualitative methods (pp. 91‐94). Bowie, MD: Brady Communications.
• Smith, M. J., & Liehr, P. (2013). The theory of attentively embracing story. In M. J. Smith & P. R. Liehr (Eds.), Middle range theory for nursing (3rd ed., pp. 225‐251). New York: Springer. • Williams, L. A. (2003). Informal caregiving dynamics with a case study in blood and marrow transplantation. Oncology Nursing Forum 30, 679‐686.
• Williams, L. A. (2007). Whatever it takes: Informal caregiving dynamics in blood and marrow transplantation. Oncology Nursing Forum, 34, 379‐387.
• Williams, L. (2013). The theory of caregiving dynamics. In M. J. Smith & P. R. Liehr (Eds.), Middle Range Theory for Nursing (3rd ed., pp. 309‐327). New York: Springer.
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