Reading Research Literature #2
nursing
Basic Search Advanced Publications Browse Preferences English Help
Full text
Full Text
A Process of Decision Making by Caregivers of Family Members With Heart Failure Sanford, Julie, DNS, RN; Townsend-Rocchicciolli, Judith, PhD, RN; Horigan, Annie, MSN, RN; Hall, Pat, PhD, CRNP. Research and Theory for Nursing Practice 25.1 (2011): 55-70.
Abstract (summary)
Heart failure (HF) is a major cardiovascular problem and the number of people living with HF continues to climb. Throughout the illness continuum, patients and their family caregivers are involved in decision making. As the illness worsens and patients can no longer make decisions, decision making becomes the responsibility of their caregivers who may have little preparation for the role. The purpose of this grounded theory study was to examine how caregivers of family members with HF make decisions. A nonlinear decision-making process consisting of several actions was identified, which included actualizing; seeking input, information, or support; reflecting; choosing; evaluating; and validating the decision.
Headnote Heart failure (HF) is a major cardiovascular problem and the number of people living with HF continues to climb. Throughout the illness continuum, patients and their family caregivers are involved in decision making. As the illness worsens and patients can no longer make decisions, decision making becomes the responsibility of their caregivers who may have little preparation for the role. The purpose of this grounded theory study was to examine how caregivers of family members with HF make decisions. A nonlinear decision-making process consisting of several actions was identified, which included actualizing; seeking input, information, or support; reflecting; choosing; evaluating; and validating the decision.
Keywords: decision making; heart failure; caregiving; grounded theory
Heart failure (HF), a complex cardiovascular syndrome, is increasing in incidence throughout the world. In 2003, the World Health Organization (WHO) noted that cardiovascular disease accounted for more than 16.7 million deaths (29.2%) of all deaths worldwide with 7.2 million of these deaths attributed to ischemic heart disease. According to the American Heart Association (AHA), almost 6 million Americans have HF with more than 670,000 new patients who are 45 years of age or older diagnosed each year (AHA, 2009). In 2003, the Study Group on HF Awareness and Perception in Europe (SHAPE) noted that approximately 14 million people in Europe currently suffer from HF and suggests that number will escalate to more than 30 million Europeans by the year 2020 as the population ages. Blackledge, Tomlinson, and Squire (2003) predict that nearly 40% of HF patients will die within 1 year of hospitalization as case fatality remains high and prognosis poor.
As the global population ages, the economic impact of HF on global health systems will become even greater. Historically, patients with HF faced rapid deterioration and quickly died from the disease. With advances in pharmacologic therapy and other treatment interventions to support the failing heart, the trajectory of illness in HF has evolved into one that is more gradual in its progression, allowing patients to live longer, lead more productive lives, and make more decisions as their health status changes. When the patient with HF is discharged from the acute care facility or rehabilitation center, the family may become overwhelmed with the physical and mental requirements of care and the many decisions that must be made. Family caregivers of patients with HF often do not possess the skills necessary to navigate health care systems that have become increasingly complex. Implicit in this need to make decisions is the ability of the caregiver to make treatment decisions or assist with decision making at critical points as the disease progresses. The family's ability to cope effectively and make good treatment decisions with the needs of the patient in mind may affect the patient's outcome (Family Caregiver Alliance, 2009).
To assist patients with HF and their caregivers in making treatment and care decisions, nurses must understand how the decision process for caregivers occurs. Caregivers have an integral and critical role throughout the illness experience and play a crucial part in the decision-making process; however, little is known about how they make decisions for patients with HF. The purpose of this study is to describe decision making by caregivers of patients with HF. The specific research question for this study is this: How do caregivers of family members with HF make decisions?
CAREGIVING AND DECISION MAKING
Caring for a patient with HF is stressful and becomes more so as the disease progresses and physical and emotional care become more difficult. The need for complex decision making becomes apparent. Estimates of the numbers of family caregivers in the United States vary based on the definitions and criteria used. A 2004 report estimates that 22.9 million households or 44.4 million Americans are involved in caring for a person aged 50 and older (National Alliance for Caregiving and the American Association for Retired Persons, 2004). Rogers and Komisar (2003) report that 13 million adults in the United States have chronic conditions that impair their ability to function independently. Although there are no exact numbers of informal caregivers of patients with HF, it is clear that the projected numbers will increase as the disease incidence increases in an aging society.
The daily continuing burden of caregiving can result in negative physical, mental, emotional, and social outcomes (Family Caregiver Alliance, 2009). Luttik, Jaarsman, Veeger, and Van Veldhuisen (2005) note the burden caregivers encounter when caring for patients with HF, suggesting that oftentimes, the caregivers have greater physical challenges than the patient. Caregivers have little preparation for the caregiving role and are in great need of physical, emotional, and respite support as well as support to make sound decisions.
Decision Making in Caregiving
With advances in medicine, people with chronic illnesses are living longer, many times necessitating assistance with or abdication of the decision making to their caregivers. As the patient's health declines, caregivers are called on to make decisions more frequently (Hall, Sanford & Demi, 2008). Although the patient may have discussed their wishes or left written documentation of their preferences for care, such requests often do not have an impact on the decisions that are eventually made by caregivers (Shalowitz, Garrett-Mayer, & Wendler, 2006; Vig, Taylor, Starks, Hopley, & Fryer-Edwards, 2006). An understanding of how caregivers make decisions can serve to strengthen needed support and information during the caregiving experience.
Caregivers affect how decisions concerning the health of the patient occur, particularly when the patient can no longer make decisions on their own. It is important to note that decision-making studies are more prevalent in other chronic diseases such as cancer, dementia, and renal failure, but few studies are available that examine decision making in HF. This is significant in that caregivers' decisions may ultimately affect the entire family and may create strain on the patient and caregivers themselves. It is often hard to separate what is best for the patient and what is best for the family. A major challenge that caregivers face is making decisions for a family member who has impaired judgment (Menne & Whitlatch, 2007).
Empirical Evidence Regarding Caregiver Decision Making. Research has shown that shared decision making between patient with HF and the caregiver can lead to a better self-care. Sebern and Riegel (2009) found that older patients with HF and caregivers who report their patient's health as good also report better shared communication and decision making, self-care maintenance, and self-care confidence. However, not all caregivers and patients want information regarding the prognosis of the illness. Fried, Bradley, and O'Leary (2003) studied end-of-life care in cancer patients and found that many elders and caregivers are unable or unwilling to accept a prognosis of limited life expectancy despite previous reports indicating a desire for such disclosure. Hansen, Archbold, Stewart, Westfall, and Ganzini (2005) report that role strain for caregivers exists during the actual decision-making phase, as well as during the days, months, and years prior to the event and may continue after the decisions are made. Quinn, Dunbar, and Higgins (2010) examined the degree of congruence between patients with HF and their primary caregivers on symptom assessment and self-care management behaviors. Findings suggest that caregiver as proxy appears to be a reasonable substitute for patient's responses in a community setting. The study is important in that it validates the importance of the need for caregivers to have specific knowledge of the disease to make the best decisions possible.
Theoretical Evidence Regarding Caregiver Decision Making. Examining the evidence of how caregivers and patients with HF make decisions to engage in self-care is also an important consideration in how decision making occurs in HF. In a qualitative study, Clark et al. (2008) examined individual and contextual factors perceived by patients and their informal caregivers that influence their willingness to undertake effective HF self-care. This study is significant in that it suggests that knowledge of HF is potentially a determinant of outcomes based on the ability of the caregiver to make decisions. A grounded theory study by Crist, Garcia-Smith, and Phillips (2006) examined the process by which 23 Mexican American elders and their caregivers decided to use formal home care services. A three-stage theory emerged that describes the decision process to use formal home care: taking care of our own, acknowledging options, and becoming empowered. This study is important in caregiving decision research in that it purports that the Mexican American family maintains their cultural norms while making difficult treatment decisions. In a phenomenological study in Taiwan, nine mothers shared their experience of family interactions and relationships while facing decisions about their child's heart surgery. A five-step decision process emerged and findings indicate the entire family experienced psychological distress, role reorganization, and a remodeling of family functioning (Shu-Fan, Pei-Fan, & Kai-Sheng, 2007).
Hall et al. (2008) examined moral decision making by wives of patients with life-threatening cardiovascular disease. Using grounded theory, factors influencing decision making and decision-making patterns were identified. Hall (1994) describes a five-step process of decision making, which includes searching, seeking, reflecting, accepting, and decision making. This study was limited to only one specific group of caregivers and examined decision making retrospectively after a family member had died. Application of this theory to concurrent decision making by caregivers other than wives forms the foundation for the current study.
After review of the literature and examination of possible theories that could explain how caregivers of family members with HF make decisions, researchers determined that none is sufficient to explain how this group makes decisions. As a result, these theories are used as a sensitizing framework for the current study. Although there is limited empirical evidence that validates how decision making occurs between patients with HF and their caregivers, it is clear that the willingness, knowledge, and ability to make these decisions is inherent in the outcomes of care.
METHODS
A qualitative design using grounded theory methods was used to examine the process of decision making among caregivers of patients with HF (Charmaz, 2006). After Institutional Review Board approval, 20 participants were recruited from cardiology offices, inpatient hospital units, or adult day care facilities over a 12-month period from 2008-2009. To ensure data variation, five caregivers of patients with HF were interviewed from each of the four stages of the HF classification (Hunt et al., 2005). To qualify as a participant, the caregiver had to be related to the patient with HF, provide one activity of daily living, and/or assist the care recipient with two instrumental activities of daily living and not be paid for services. Demographic data collected included caregiver gender, marital status, ethnicity, employment status, income, living arrangement, and relationship to patient with HF.
Data Collection
After informed consent was obtained, unstructured open-ended interviews were conducted in private mutually agreed on locations: the caregivers' homes, places of employment, or the library. The interviews were audiotaped and questions began broadly with statements such as, "Tell me about your family member's illness." As the conversation progressed, questions specifically related to decision making were asked (see Table 1 for the interview guide). The interviewers kept memos about the experience and took notes on key points that needed further clarification. Interviews lasted from 45 minutes to 2 hours, which included time for completion of demographic data. The sample includes 20 caregivers of family members of patients with HF who live in the
Southeastern United States (see Table 2 for demographic characteristics of the participants).
Data Analysis
Data were transcribed verbatim, checked for accuracy, and entered into the NVivo qualitative software program. Researchers independently coded the data line by line after each interview and then met for focused coding to develop the most salient categories of the data. The core conceptual categories were identified, and links between them resulted in theoretical categories. As data were analyzed, theoretical sampling of pertinent data was used to elaborate and refine categories in the emerging theory until saturation was obtained (Charmaz, 2006). Memo writing of impressions during data collection, thoughts during analysis, and progression to theoretical development were completed to ensure rigor of the study. A theoretical model was developed that describes the process of decision making by caregivers of family members with HF (see Figure 1). Triangulation is a method used by qualitative researchers to establish validity in their work (Guion, 2002). Theory triangulation involves the use of multiple theoretical perspectives to draw inferences or conclusions from a set of data in an effort to validate data findings (Watson, McKenna, Cowman, & Keady, 2008). Theory triangulation was used to determine if the process of decision making among participants in this study is linked with a theory that emerged from a previous study of decision making by wives of patients with HF at end of life (Hall, 1994), as well as comparing findings to current literature.
FINDINGS
The theoretical model (see Figure 1) that emerged from data describes the process of decision making by family caregivers of patients with HF. Generally, caregivers make decisions through a process of phases; though at any time, caregivers may progress through these actions in a nonlinear fashion.
Phase 1: Actualization of Issue, Problem, or Challenge
Caregivers of patients with HF are confronted with many types of decisions. Some decisions occur at the onset of diagnosis, whereas others, such as when to go to the hospital and decisions about whether to work, are revealed as the patient continues through the disease process. Actualization of an issue, problem, or challenge, the realization that the caregiver has a decision to make, seems to be especially pertinent at the point of diagnosis. A few caregivers note that their family member is dealing with what they thought to be stable chronic illnesses and the diagnosis of HF itself seems to blindside them. A 34- year-old African American wife of a patient with Stage II HF states, "A cardiologist came in and that was when, as we put it, 'all hell broke loose.' They told us that he was diagnosed with HF. So, there were no prior signs or any type of heart problems."
Actualization of a problem is experienced as a change in how common decisions about everyday life are affected by illness. Decisions that used to be simple and uncomplicated now have an additional layer of complexity due to the illness. A 26-year-old African American wife of a patient with Class III HF shares, "We have had to make decisions based on everything in our life. We can't even decide on a vacation without having considerations about his health and ability. How long we stay, where, what devices we need." Significant situations that emerge as challenges that caregivers have to make decisions about include when to access the emergency medical system, when to go to the doctor, and how to manage medication. Contemplating a situation when her husband's implanted defibrillator went off, a 42- year-old White caregiver of a patient with Stage III HF states, "Now if it had knocked him out cold, I wouldn't have hesitated. I would have automatically called 911. That was what helped me make that decision." Patients with HF who become symptomatic need adjustment of their medications that often require intervention by caregivers. One African American daughter who cared for her 76-year-old mother with Stage IV HF shares how she monitors her mother's blood pressure and adjusts medications as instructed, "From time to time, we change her medication, especially when its [BP] real abnormal."
Another issue that requires decision making by almost all caregivers interviewed includes the need to make financial and work decisions. Caregivers often have to face the challenge that there is no other choice for their loved one but to seek disability. The inability to sustain employment is in stark contrast to their youth and the expected role of their family member and points to the seriousness of the diagnosis. A 34-year-old African American wife of a patient with Stage II HF stated, "The doctors came in to tell us everything about filing for disability . . . doctors don't come and tell you at a young age when you're full of life to fill out disability papers because they don't want you on it."
Phase 2: Seeking Information, Input, or Supp ort
The next phase in the theoretical model that emerged from the data is seeking information, input, and support. Caregivers of patients with HF consistently share that they need to get information, input, and support for the decision to be made. Patient input is desired above all others in the caregivers' need to put the patient as the focus of the decision. Some caregivers share that the patient is still the primary decision maker although the caregiver often have great influence in the choice that is made. Patient abdication of decision making somewhat correlates with the trajectory of illness; other times it is dependent on the relationship between the patient and caregiver. As caregivers assume more of the responsibility for decision making, they are clear in their need for information, input, and support from others. A 49-year-old White caregiver of her spouse, who has Stage II HF, states,
Currently he is still making the majority [of decisions] but he isn't making them alone. He knows what he wants but he doesn't know how to get it or he doesn't have the patience. So he comes to me, we research it together, we talk about the decisions that need to be made, and I talk him into what he needs to do.
Caregivers sought to include others when making decisions and sought support and input from many sources. A caregiver who depends on support from others for decision making states, "I wouldn't suggest that anybody try to do it (make decisions) by themselves. It would tear you apart."
Information is critical to the caregivers' ability to make decisions, whether that choice is made with the patient or for the patient. A 51-year-old White wife whose husband suffers from Stage III HF shares, "Now as far as how we make decisions, information is very important to us, we have to have a lot of information, medically to look at pros and cons." Another caregiver, a 36-year-old African American whose mother has Stage IV HF shares, "Yeah, I'm a hairdresser so I deal with a lot of people with HF, high blood pressure, all of these conditions . . . talking to the customers you know I learned . . . really talking with people and getting information."
Caregivers often share that the process of seeking information occurs simultaneously with seeking input and support. A 38-year-old African American wife of a patient with Stage III HF states, "Everybody has health issues and they kinda bounce them off of each other. They are supportive. They are in contact a
lot." And,
We always talk to our extended family, our parents, my sister . . . friends give us advice and guidance and support in difficult times as well as difficult decisions . . . We have been very much together and a partnership. John knows everything about his condition, there are no secrets and we both want honest evaluation and appraisals so we can make decisions.
Caregivers are clear that support is necessary for good decision making. They share that family, friends, and health care providers are essential sources of support and information. A 49-year-old White caregiver whose husband has Stage III HF states, "You need someone that can support you . . . someone that can be there . . . it is like you are the go to person and you need someone to go to and if nobody is there, that is hard." Caregivers share that relationships with health care providers are essential because they provide support and understanding that is critical to the decision making process. A 56-year-old White caregiver whose husband has Stage II HF shares, "I have visited doctors who were in and out [of the examination room]. But the people that we have met have told us what they thought, and how they intended to work with us and deal with it." Health care providers who view the caregiver as a partner in the treatment plan of the patient with HF provide support and understanding that caregiver's state is critical to the decision-making process. An African American caregiver whose 43-year-old husband has been recently diagnosed with Stage III HF shares,
The nurse called after he had an echo done. She said, "Well, he is going to have to have a pacemaker. How would you like to do this, would you like to tell him first, and then he come in and talk to the doctor, or would you rather the doctor told him?" I will be forever grateful for that, just for her to give me the opportunity to sit down and initially break it to him.
Caregivers also share that they need to seek spiritual support when caring and making decisions for their family members with HF. A 55-year-old White caregiver whose mother has Stage II HF states, "If nothing else, find you a church and realize that you can't make someone do something and you just have to accept what changes they are willing to make." A 43-year-old African American whose mother has Stage IV HF states, "All you can do is hope and pray that you make the right decisions, stay strong and give it your all and try your best and take one day at a time.
Phase 3: Reflecting
For the caregivers of patients with HF, the ability to manage what is often complex and unfamiliar information they receive from physicians, nurses, friends, and family is frequently frightening and involves a period of thinking and self-reflecting prior to making a decision. As the concept of reflection emerges in the model, it is often employed as a means for review of how information is received and handled. Reflection is spontaneous in nature and allows caregivers to assess information, examine their problem-solving ability, and put their thoughts into an organized perspective. In addition, reflecting via discussion with others often illustrates selfawareness of an issue as well as insight into a specific behavior or a "why" something is done. One 49-year-old White caregiver, when reflecting on how she uses information to make decisions about her husband with Stage III HF says, "I guess the best way I make decisions is try to look at the big picture and long-term effects versus what it's like right now. I can't afford to not sit down and rationally think something out."
Phase 4: Decision Choice
After realizing that they are faced with an issue or challenge, seeking input or support, and reflecting on their options, it becomes apparent that about midway through this process, caregivers have to make a decision or a choice. One caregiver recalls how she has to make choices about her husband's health even though her husband with Stage II HF may feel she is overreacting. The 42-year-old White caregiver shares, "I wanted to call 911 but he is hardheaded and it is hard for me to do it because if he doesn't want me to, it stresses him out even more. Sometimes I have to go over his head."
Phase 5: Evaluating Decision Choice
Once a decision is made, caregivers critically evaluate that choice to determine if the right decision has been made. A 24-year-old African American caregiver who makes difficult treatment decisions for her husband diagnosed with Stage IV HF evaluates her decision choice when she shares, "That was hard, it has really taught me to be a little bit more adult like in my decisions. I had to figure out if I had done the right thing." Whether the decisions relate to managing medications, decisions about family and work, or disease treatment, caregivers evaluate the decisions they make. A 44-year-old daughter who provides care for her father with Stage III HF refers to how she evaluates her decision choice, "Just going with your gut feeling and trying to make sure you make the best choice. I don't care if it causes conflict. I'll just make the decision, think about it, and be confident in the decisions I make."
Phase 6: Seeking Validation
Seeking validation occurs at each phase of the decision-making process of the caregivers. Validating emerges as an important task for caregivers, particularly in the areas of seeking information and input, and decision choice. Some caregivers seem to second-guess their decisions, but most caregivers make decisions and move forward. Researchers note that caregivers ask questions and validate information with physicians and nurses at many points along the disease trajectory. Family also assists with validating decisions. A White 48-year-old daughter who provides care for her mother with Stage II HF reports validating information with her aunt, and although her aunt did not assist in any actual decision making, she serves as a sounding board, which allows the caregiver to stay focused and on track.
Influences and Context
The process of decision making is influenced by situations, people, relationships, and the environment. As the caregivers describe how they make decisions, they also share what influences their decision making. In the background of the decisionmaking process is the context of the caregiver and patient. Context is the world the family lives in, and how their world influences decision making is unique for each family. Several themes emerge from the data regarding influences and context that are shared by most caregivers.
The relationship between caregivers and their family member is an essential influence on the decision-making process. A 34-year-old African American married participant expresses the shock at having to adjust her expectations to this life-threatening disease when she states,
I think we are at a very young age to have to be making these decisions. We have had a lot of crises since we have been married. This is not the Cinderella-
type marriage I thought I would have. These are not the decisions I thought I would be making for my husband at age 40.
Another wife, a 52-year-old White woman, shares that her relationship with her husband who has Stage II HF has caused them both to grow, stating, "I feel very positive that we have the kind of relationship we do where we talk about these things together and listen to others' advice."
Each caregiver identifies family relationships as significantly influencing decision making. Strong relationships with family members are consistently cited as a positive influence, whereas difficult family relationships often lead to stress for the caregiver and patient with HF. Sibling relationships are frequently cited as influential to decision making. A 47-year-old White daughter, when discussing her sibling, shares, "There were times I needed help and I needed to work- she just couldn't do it. I told her right then, 'Well, you don't ever come up here and run the show when you can't show up now.'" An African American wife, 26 years old, whose husband is newly diagnosed with Stage III HF has to interact with skeptical in-laws stating, "My in-laws have his best interest at heart; this was like a deal breaker-type of situation. All eyes on me, 'Is she going to stick in there? Is she going to hang on?'" Relationships with children in the caregiver families also influence the decisions that are made. A 36-year-old White mother who cares for her husband with Stage III HF and her 11-year-old son says, "My love for him [son] influences the decisions I make because he needs his Daddy."
When making decisions for patients with HF, caregivers often express that their feelings and those of the patients' influence the process. Caregivers share that they are scared when making decisions. A 43-year-old White wife of a patient with Stage IV HF describes her fear of making the wrong decision, "I want to make the right decisions for him. I was scared of upsetting him more and him freaking out even more than he was already." Caregivers report that communication and relationships with health care providers also influence decision making. A 43-year-old White wife of a Stage III HF patient shares, "Communication with the health care workers dealing with my husband helps me make decisions."
Consistently, one of the common themes that emerge as an influence to decision making is the financial considerations of the family. Families struggle with situations where patients with HF who are in their prime working years are suddenly diagnosed and could no longer earn an income. Caregivers also share their frustrations with the social security disability process and the length of time it takes to get a disability designation. These same caregivers share that they have difficulties working because they are afraid to leave their family members home alone or they have frequent absences to take their family members to appointments. Many patients who became unemployed have worked jobs that did not offer health insurance benefits and the financial toll on the family results in bankruptcy or severe financial strain. Caregivers spoke of the costs of medication and how they make decisions about treatment regimens based on available resources for medication purchase.
Those caregivers and patients who have health insurance express gratitude for the coverage. A 36-year-old African American wife of a patient with Stage IV HF describes viewing her husband's first hospitalization bill when he was diagnosed with HF:
When I opened up that, I was like, I've got to be reading this wrong. I looked at it again and I saw $114,000. I saw six figures and tears began to roll down my face, and I really became emotional because all I kept thinking was, "God what if I didn't have this insurance?" Because at one point, he was in-between insurance and that October prior to him becoming sick, I transferred him on to my insurance.
Though caregivers who have insurance are thankful, they still struggle with co-pays for medication, doctor visits, and hospitalizations. Caregivers share that the costs of medications to manage HF are expensive and that samples from the physician's offices often keep the patients from not doing without their medications. A 43-yearold White wife describes her husband's decision to not refill his carvedilol (Coreg), "He was off of it and I had no idea. He was out of it and even with my $50 co-pay, he couldn't pay it, and he didn't want to tell me. I said, 'That's your life or death.'"
CONCLUSIONS
Findings from this study highlight that the essence of decision making by caregivers of family members with HF is a nonlinear process consisting of several phases including actualization of the challenge, issue, or problem; seeking input, information, or support; reflecting on the decision; making a decision choice; evaluating the decision made; and validating the decision. This study supports and validates findings from previous studies (Crist et al., 2006; Hall et al., 2008; Limerick, 2007; Shu-Fan et al., 2007) and expands understanding of the difficulties family caregivers of patients with HF encounter in making decisions. This study suggests that each action represents an important part of the process used by caregivers as they make decisions for their family member with HF.
Actualizing the decision occurs when caregivers realize that a decision needs to be made on behalf of their family member with HF. Many different types of decisions are made, including those regarding medications, treatment procedures, finances, and range from simple to complex. Seeking information, primarily from health care providers, is considered by caregivers as essential to making decisions. Although caregivers consider their family members with HF to be the primary decision maker, when they are unable to do so or if the family member abdicates the decision making to the caregiver, the family member's input is considered most important.
After caregivers gather information and receive input and support from others, a period of conscious reflection on their options for decision making occurs. Decisions that caregivers are presented with are often considered complex and frightening. At times, caregivers feel overwhelmed with their responsibility for decision making. Reflecting allows a time for caregivers to organize their thoughts and carefully consider all alternatives to avoid making ill-informed decisions that may result in unwanted consequences, which may be regretted later.
Understanding the possible choices, coming to terms with the need to act, and then choosing the best option from available alternatives enable caregivers to make a decision for their family member. Although caregivers frequently experience some relief in actually making the decision, they experience many other emotional reactions they then have to deal with. On occasion, when one decision is made, others emerge and caregivers have to start the whole process over with each new decision. Simultaneous decision making is not uncommon.
Making the right decision is important to caregivers, and after arriving at a decision, they evaluate the decision to make sure they have made the right one. Seeking input and support from others as a means of validating that they made the right choice from available alternatives is important at this stage as well. Although most decisions are then implemented, sometimes alternatives present themselves, which result in making a different choice or returning to previous phases, especially seeking information and reflecting prior to making the decision. In addition, guessing their decision is not uncommon, and validation serves to confirm for caregivers that they made the right decision.
Decision making does not occur in a vacuum and, in the case of decision making by caregivers of family members with HF, the context in which the decisions are made is an important consideration. Different decisions are made at various points in time along the illness continuum. There are other factors that influence decision making such as the specific circumstances and situations when the decisions are made, individuals involved in the decision making and their relationship to one another, and the environment where the decisions are made. The most important variable affecting decision making is the relationship between caregivers and their family member. Health care providers play a pivotal role in assisting caregivers in making decisions by providing information as well as support. Caregivers consistently express concern for finances, which not only affect the decisions that are made but frequently add to the stress that caregivers experience.
Few studies have examined the decision-making process used by caregivers of family members with HF; therefore, findings from this study are compared with those of prior studies that investigate caregivers' process of decision making. Findings from this study are similar to those described by Hall (1994); however, the current study further expands understanding of the process of decision making as well as specific factors affecting the decision-making process and the context in which it occurs for caregivers of family members with HF. Although the five-part decisionmaking model by Hall is validated in the current study, findings suggest that there are additional actions involved in the decision-making process such as actualizing the decision when caregivers are confronted with a decision to be made as well as evaluating and validating the decision choices.
The previously described study by Crist et al. (2006) that examines the process by which Mexican American elders and their caregivers decide to use formal home care services has commonalities with the current study. Their stage of acknowledging options is similar to the stage of actualizing in the current study and likewise requires seeking input, information, or support for the decision. What they describe as the process of becoming empowered actually occurs for participants in the current study during the time when they are validating the decision. Parallels can be drawn between findings from Shu-Fan et al. (2007) and the current study. Families in the Shu-Fan et al. study are shocked and confused when they learn of the child's diagnosis of a potentially lethal condition. Families transition through the hope that surgery would not be necessary but concluded that it is essential for the survival of their child. This step in the process is similar to that of actualization in the current study that caregivers realize there is a decision that must be made for the health of their loved one. Families also endeavor to make the right decision for their child, develop a trust for health care providers, and seek support from others who have gone through the same experience. Caregivers of those with HF consistently state that they need information and support from others to make the right decision for their family member. Further, they spend time evaluating their decision choice to ascertain whether the right decision has been made.
Studies that explore caregivers' decision-making process regarding the withdrawal of life-sustaining treatments also support the current findings. Limerick (2007) found that there are three influencing domains that caregivers fluctuate among when making end-of-life decisions for their loved ones. Just as participants in the current study seek information, input, and support, Limerick found that surrogate decision makers who are interacting in the intensive care unit environment domain desire and obtain information regarding the patient's condition and prognosis. When decision makers are interacting in the personal domain, they engage family members and solicit their advice and support in the decisionmaking process. Findings from the current study reflect this same need for family caregivers of those with HF. Further, caregivers in this study find it important to develop a relationship with health care providers as the surrogate decision makers in the Limerick study do.
As an escalating global problem, HF is a complex and highly disabling syndrome that results in great costs for the patient and their family (White, Howie- Esquivel, & Caldwell, 2010). Significant lifestyle modifications are required for patients suffering from HF, and they may need assistance from family members serving as informal caregivers. Decisions regarding medication regimens and treatment choices frequently must be made by patients with HF and their family caregivers (White et al., 2010) and can be difficult for individuals most often poorly prepared to make such complex management choices. Nurses are in the unique position to provide meaningful assistance to family members serving as caregivers of patients with HF. An understanding of the process of decision making can have a significant impact on nursing interventions that, in turn, may improve caregiving decision making and patient outcomes.
Sidebar TABLE 1. Interview Questions and Probes
Question/Probe
Tell me about your family member's illness.
Tell me what decisions you make regarding care of your family member.
Share how you feel about making the decisions.
What helps you or hinders you in making those decisions?
Tell me about what other family members think and feel about the decisions.
Tell me about how other family members are involved in making those decisions.
Looking back, if you have to do it over again, would you make the same decisions?
What advice would you offer others in making similar decisions?
What things do you take into consideration when making decisions?
Everyone is influenced in some way when making decisions. Who or what influences you?
References REFERENCES
American Heart Association. (2009). Heart disease and stroke statistics-2010 update: A report from the American Heart Association. Retrieved February 1, 2010, from http://circ. ahajournals.org/cgi/content/abstract/CIRCULATIONAHA.109.192667v1
Blackledge, H. M., Tomlinson, J., & Squire I. B. (2003). Prognosis for patients newly admitted to hospital with heart failure: Survival trends in 12,220 index admissions in Leicestershire 1993-2001. Heart, 89, 615-620. doi:10.1136/heart.89.6.615
Charmaz, K. (2006). Constructing grounded theory: A practical guide through qualitative analysis. London: SAGE.
Clark, A. M., Reid, M., Morrison, C., Capewell, S., Murdoch, D., & McMurray, J. (2008). The complex nature of informal care in home-based heart failure management. Journal of Advanced Nursing, 61(4), 373-383. doi:10.1111/j.1365/2648.2007.04527.x
Crist, J. D., Garcia-Smith, D., & Phillips, L. R. (2006). Accommodating the stranger en casa: How Mexican American elders and caregivers decide to use formal care. Research and Theory for Nursing Practice, 20, 109-126. doi:10.1891/088971806780641791
Family Caregiver Alliance. (2009). Caregiving: A universal occupation. Retrieved from http://caregiver. org/caregiver/jsp/content_node.jsp?nodeid52313
Fried, T. R., Bradley, E. H., & O'Leary, J. (2003). Prognosis communication in serious illness: Perceptions of older patients, caregivers, and clinicians. Journal of the American Geriatrics Society, 51, 1398-403. doi: 10.1186/1471-2296-7-9
Guion, L. A. (2002). Triangulation: Establishing the validity of qualitative studies. University of Florida Extension. Retrieved February 1, 2010, from http://www.rayman-bacchus.net/ uploads/documents/Triangulation.pdf
Hall, P. (1994). Moral decision-making by wives of patients with life-threatening cardiovascular disease. Unpublished dissertation. Georgia State University.
Hall, P., Sanford, J. T., & Demi, A. S. (2008). Patterns of decision-making by wives of patients with life threatening cardiac disease. Journal of Family Nursing, 14, 347-362. doi: 10.1177/1074840708322235
Hansen L., Archbold, P. G., Stewart, B., Westfall, U. B., & Ganzini, L. (2005). Family caregivers making life-sustaining treatment decisions: Factors associated with caregiver role-strain and ease in LST decision-making process. Journal of Gerontological Nursing, 31, 28-35.
Hunt, S. A., Abraham, W. T., Chin, M. H., Feldman, A. M., Francis, G., Ganiats T. G., et al. (2005). ACC/AHA guideline update for the diagnosis and management of chronic heart failure in the adult: A report of the American College of Cardiology/American Heart Association task force on practice. Journal of the American College of Cardiology, 45, 82.
Limerick, M. H. (2007). The process used by surrogate decision makers to withhold and withdraw life-sustaining measures in an intensive care unit. Oncology Nursing Forum, 34, 331-339. doi:10.1188/07.ONF.331-339
Luttik, M. L., Jaarsman, T., Veeger, N., & Van Veldhuisen, D. J. (2005). For better and for worse: Quality of life impaired in HF patients as well as in their partners. European Journal of Cardiovascular Nursing,4(1), 11-14. doi:10.1016/j.ejcnurse.2004.12.002
Menne, H. L., & Whitlatch, C. J. (2007). Decision-making involvement of individuals with dementia. Gerontologist, 47, 810-819.
National Alliance for Caregiving and the American Association for Retired Persons. (2004). Caregiving in the U.S. Retrieved February 1, 2010, from http://www.caregiving.org/ data/04finalreport.pdf
Quinn, C., Dunbar, S. B., & Higgins, M. (2010). Heart failure symptom assessment and management: Can caregivers serve as proxy. Journal of Cardiovascular Nursing 25(2), 142-148. doi: 10.1097
Rogers, S., & Komisar, H. (2003). Who needs long-term care? Fact sheet, long-term care financing project. Washington, DC: Georgetown University Press.
Sebern, M., & Riegel, B. (2009). Contributions of supportive relationships to HF self-care. The European Journal of Cardiovascular Nursing, 8, 97-104. doi:10.1016
Shalowitz, D. I., Garrett-Mayer, E., & Wendler, D. (2006). The accuracy of surrogate decision makers: A systematic review. Archives of Internal Medicine, 166, 493-497.
Shu-Fan, L., Pei-Fan, M., & Kai-Sheng, H. (2007). Maternal experiences making a decision about heart surgery for their young children with congenital heart disease. Journal of Clinical Nursing, 16, 2323-2330. doi:10.1111/j.1365-2702.2007.02004.x
Study Group on HF Awareness and Perception in Europe. (2003). Survey Results to the General Public, Annual Congress of the European Society of Cardiology in Vienna. Retrieved February 1, 2010, from http://www.heartfailure-europe.com/index1.php?item5263
Vig, E. K., Taylor, J. S., Starks, H., Hopley, E. K., & Fryer-Edwards, K. (2006). Beyond substituted judgment: How surrogates navigate end-of-life decision- making. Journal of the American Geriatric Society, 54, 1688-1693.
Watson, R., McKenna, H., Cowman, S., & Keady, J. (2008). Nursing research: Designs and methods. London: Churchill Livingston.
White, M. M., Howie-Esquivel, J., & Caldwell, M. A. (2010). Improving HF symptom recognition: A diary analysis. Journal of Cardiovascular Nursing, 25, 7- 12. doi:10.3928/00989134- 20100930-06
Indexing (details) Cite
MeSH Humans, Caregivers -- psychology (major), Decision Making (major), Family -- psychology (major), Heart Failure -- nursing (major)
Title A Process of Decision Making by Caregivers of Family Members With Heart Failure
Author Sanford, Julie, DNS, RN; Townsend-Rocchicciolli, Judith, PhD, RN; Horigan, Annie, MSN, RN; Hall, Pat, PhD, CRNP
Publication title Research and Theory for Nursing Practice
Volume 25
Issue 1
Pages 55-70
Number of pages 16
Publication year 2011
Publication date 2011
Year 2011
Publisher Springer Publishing Company
Place of publication New York
Country of publication United States
Publication subject Medical Sciences--Nurses And Nursing
ISSN 15416577
Source type Scholarly Journals
Language of publication English
Document type General Information, Journal Article
Accession number 21469541
ProQuest document ID 853503862
Document URL http://search.proquest.com.proxy.devry.edu/docview/853503862? accountid=147674
Copyright Copyright Springer Publishing Company 2011
Last updated 2014-04-03
Database ProQuest Nursing & Allied Health Source
Tags
AuthorAffiliation Julie Sanford, DNS, RN
University of South Alabama, Mobile
Judith Townsend-Rocchicciolli, PhD, RN
James Madison University, Virginia
Annie Horigan, MSN, RN
Duke University, North Carolina
Pat Hall, PhD, CRNP
Diagnostic Medical Clinic, Mobile, Alabama
AuthorAffiliation Correspondence regarding this article should be directed to Julie Sanford, DNS, RN, University of South Alabama, Mobile. E-mail: [email protected]
Copyright Springer Publishing Company 2011
About tags | Go to My Tags
Be the first to add a shared tag to this document.
Add tags Sign in to My Research to add tags.
Back to top
Contact Us Privacy Policy Cookie Policy Accessibility Sitemap
Copyright © 2014 ProQuest LLC. All rights reserved. Terms and Conditions Chamberlain Library Ask-a-Librarian