Table 3.

Main Energy Sources for Informal Caregivers

Themea	Definitiona	Exampleb
Commitment
Enduring responsibility	Caregiver feelings of responsibility for the welfare of the patient that extend over time, despite difficulties or challenges that may arise	A 68-year-old husband of a patient expressed his desire to meet the challenges ahead: “It is a role that I relish because I wouldn’t want anybody else to be that caregiver.… Whenever that tumor was diagnosed, I knew … [we] were going to have to face this together.”
Making the patient priority	Placement of patient needs before all others; often requires significant life changes made for patient’s welfare	A 53-year-old mother described a difficult decision made in the best interest of her son; although she wanted to spend every moment with her son, she chose to continue working to support the family.
Self-affirming, loving connection	Caregiver feelings of connectedness with the patient, where meeting patient needs is emotionally satisfying for the caregiver	The 62-year-old wife of a patient described the importance of her role as a caregiver: “In some ways it is better because you are closer now than you were, and I feel sorry for him mostly because he had a wonderful brain, and a wonderful memory, and to see someone lose that, but he seems happy [and] that is the main thing.… He is so grateful to me for helping him.”
Supportive presence	Remaining at the patient’s side with comfort, encouragement, and a positive attitude when the caregiver can do nothing else for the patient	A 50-year-old husband caring for his wife described his support for her: “You have got to be very supportive because their mind changes after a brain tumor.… Sometimes she would say … she is sorry she is such a hard patient to work with. I guess … you have to remember that love is the thing that brought us together and our love and our faith in God is what is keeping us going.”
Expectation Management
Envisioning tomorrow	Struggling with an unknown future involving hope, fear, or both to help caregivers find purpose and prepare for disappointments	A 40-year-old wife caring for her husband described both a hopeful and fearful outlook on the future: “What I hope to happen and what is going to happen are two different things. I hope they can contain the growth … and he could just live another two to three years … but it looks like it is going to be six months. It is a monster tumor and it grew through radiation and [chemotherapy], so it is going to be much more difficult now that he understands that he is dying, because he had a lot of hope.”
Gauging behavior	Explaining, predicting, or reacting to the patient’s actions or statements based on previous knowledge and experience	A 50-year-old husband caring for his wife described anticipating his wife’s needs: “I have been doing it [caregiving] with her so long now that I kind of know what needs to be done before she asks [and] I … anticipate what she will be wanting or needing.”
Getting back to normal	Anticipating the return of an ordinary life that was lost in the demands of illness and treatment	A 52-year-old husband caring for his wife described a hope for a return to normal life: “I would like to have a sense of normalcy.… I know that it might be kind of a false sense of normalcy, but a feeling that … at least things are good for now.”
Reconciling treatment twists and turns	Comparing actual to anticipated patient outcomes to accept the reality of the outcomes	A 28-year-old woman caring for her sister told of accepting the reality of the outcomes of treatment: “I am not all that medically inclined, but [I] try to work with her and help her understand that if this procedure don’t work, there is going to be another one … and that one might be a little bit better than the first one or it might be a little worse than the first.”
Taking one day at a time	Focusing in the present as a means of dealing with an ambiguous future that cannot be envisioned	A 38-year-old wife caring for her husband described dealing with illness by living one day at a time: “His favorite saying all along … is, ‘None of us know what our date is on our contract.’ … It is obvious that we are just supposed to live it one day at a time.”
Role Negotiation
Appropriate pushing	Caregiver taking responsibility to ensure that the rules for recovery set by healthcare providers are followed	A 74-year-old wife described taking responsibility and enlisting the support of her son to convince her husband to take his medications, despite his disinclination to do so.
Attending to patient voice	Describes caregivers listening and considering patient perspectives before deciding on a course of action	A 50-year-old husband described listening to his wife’s perspective: “If I had tried to pressure her into signing up for disability, that would have been a bad deal. So I didn’t pressure her … and she made up her mind that she was going to [apply].”
Getting a handle on it	Coming to grips with the reality of the demands of illness and identifying strategies to meet caregiving demands	A 53-year-old wife caring for her husband described getting a handle on the new diagnosis and new responsibilities: “This has been [our] first experience with cancer … so dropping into brain cancer has been sort of jumping into the deep end of the pool. What has been difficult for me has been the amount of additional work that fell in my lap: taking care of financial things, taking care of insurance, taking care of the worries of all of that.”
Sharing responsibilities	Determining caregiving needs and dividing responsibilities between people such as the caregiver, patient, healthcare provider, and family and friends	A 32-year-old daughter caring for her father discussed sharing caregiving responsibilities: “This is just way over my mother’s head. I have a pill organizer and I fill it up.… She doesn’t even know what those pills are.”
Vigilant bridging	Caregiver communication with healthcare personnel to support the best interest of the patient	A 50-year-old husband caring for his wife described how he connected her with the healthcare system by insisting that the physician order magnetic resonance imaging following a seizure episode.
Self-Care
Cultivating healthy habits	The caregiver maintaining or improving their own health to meet the caregiving demands	A 53-year-old mother caring for her son described taking care of her own health: “I am taking some vitamins and eating very well so I can be strong.”
Getting away from it	Finding space to temporarily experience ordinary life away from the demands of caregiving	A 53-year-old wife caring for her husband described getting away from her caregiving responsibilities on occasion: “I really tried to keep my life going.… Every now and then I do get to a concert or I go to see friends, and I know that part is real important for me.”
Letting it out	Expressing the feelings and frustrations associated with caregiving	A 28-year-old woman caring for her sister described expressing her frustrations: “She needs help, and I often tell [my family], ‘She is going to have these mood swings, that is what drugs do to you … you have to be patient. You might have to walk out of the room, grit your teeth, go outside and scream and holler, but come back.’ That is what I do sometimes.”
Supportive physical environment	Creating accommodations, food, and other amenities that are comfortable and convenient for caregiving	A 32-year-old daughter caring for her father told of creating a physical environment amenable to being able to stay with her father at all times by keeping an inflatable mat in her car.
New Insight
Experiencing personal growth	Gaining new perspectives, knowledge, and skills in the caregiving experience	A 53-year-old husband caring for his wife exhibited new perspective: “The good thing about it is I think we have learned to appreciate each day.”
Leaning on the Lord	Finding comfort and strength in the belief that a higher power has control of the situation	A 48-year-old husband caring for his wife described leaning on the Lord: “We both prayed and said, ‘God, you are going to have to help us with this one, this is bigger than us,’ and when we turned it over, it is not a burden.”
Recognizing positive outcomes	Being uplifted by events that signify to the caregiver an improvement in the patient’s health	A 53-year-old husband described how surgery led to a perceived improvement in his wife’s health, giving her immediate relief and uplifting him.
Role Support
Encountering competent, compassionate care	Finding healthcare personnel who meet the needs of both the patient and caregiver	A 53-year-old wife caring for her husband described finding strength in competent medical care: “One of the things that … made it easier for me to handle was coming here and [letting go] of worries about the medical treatment.… That is a huge thing [to] have that confidence.”
Finding support for other responsibilities	Caregivers accessing assistance from other people to handle responsibilities not related to caregiving	A 32-year-old daughter caring for her father told of having her mother watch her children one day a week so she could share the day with her father.
Knowing others care	Feeling emotional support from people outside the caregiving dyad, which gives the caregiver a sense of personal value and worth	A 48-year-old husband caring for his wife said, “We have a strong family support, we have a strong church support, and it is all part of the equation.”
Meeting financial obligations	Finding ways to pay for added expenses of health care while compensating for lost income.	A 50-year-old husband caring for his wife described their decision to apply for disability.
Receiving helpful information	Acquiring the knowledge needed to perform as a caregiver	A 32-year-old woman described the process of gaining information: “Today I brought my tape recorder and I asked the doctor some questions.”

^aBased on information from Williams, 2005, 2007.

^bCaregiver quotes were transcribed from the current study’s sample.