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September 2011, Volume 38, Number 5
Informal Caregiving in Patients With Brain Tumors
Meagan Whisenant, MSN, APRN
Purpose/Objectives: To explore the experience of informal caregivers of patients with a primary brain tumor by identifying themes of the caregiving experience specific to this population.
Research Approach: Qualitative study employing Parse’s descriptive exploratory method.
Setting: National Cancer Institute–designated comprehensive cancer center in a major city in the southern United States.
Participants: 20 patients with primary brain tumors and their caregivers.
Methodologic Approach: Data collection involved a tape-recorded dialogue with caregivers using Story Theory. Patient and caregiver demographic information was collected.
Main Research Variables: Concepts of commitment, expectation management, role negotiation, self-care, new insight, and role support.
Findings: Caregivers of patients with primary brain tumors used the energy sources identified by the Model of Informal Caregiving Dynamics. Commitment is sustained through enduring patient cognitive and behavioral decline. Expectations are based on a realistic understanding of the disease trajectory and known mortality, and allow caregivers to hope for the ability to manage declining patients. Caregivers express difficulty in gauging the behavior of cognitively impaired patients. Healthcare providers support caregivers by supplying information and listening to caregivers’ stories. In contrast to a similar study involving caregivers of bone marrow transplantation recipients, these caregivers reported negative perceptions.
Conclusions: Commitment, expectation management, role negotiation, self-care, new insight, and role support motivate informal caregivers of patients with primary brain tumors in a unique way.
Interpretation: Healthcare providers can support the caregiving experience by validating efforts, providing information, and listening to frustrations. Additional research should explore interventions aimed at assisting caregivers.
As early discharge from hospital and the use of outpatient services has increased, informal caregiving for patients with cancer has become more common. A complex relationship called a caregiving dyad forms between the caregiver and the care recipient as they work together in the experience of illness (Shyu, 2000). The caregiving dyad is initiated and sustained by the forces of informal caregiving dynamics, which may vary with different illness populations (Williams, 2007) (see Figure 1). Informal caregiving dynamics is defined as the “commitment, expectation management, and role negotiation supported by self-care, new insight, and role support that move a caregiving relationship along an illness trajectory” (Williams, 2008, p. 263).
Caregivers of patients with primary brain tumors face a particular set of challenges as they deal with the functional, cognitive, and neuropsychological changes that accompany this diagnosis and treatment. The changes require family caregivers to provide emotional support and assistance in activities of daily living, health-related tasks, and financial management (Sherwood, Given, Doorenbos, & Given, 2004). The positive effects caregivers experience involve increased sense of self and accomplishment, whereas negative effects include depression, anxiety, and physical illness (Sherwood, Given, Given, & Von Eye, 2005).
Research involving the experience of caregivers of patients with primary brain tumors is limited. As a result, the purpose of this qualitative, exploratory study was to describe the informal caregiving dynamics involved in the care of patients with primary brain tumors.
Studies of caregiving have examined predictors of the experience, such as caregiver and patient characteristics, illness factors, and the dynamics involved in the process of caregiving. Predictors for poor caregiving outcomes include female gender, wife and daughter caregivers, and being of Caucasian non-Hispanic ethnicity (Baumgarten et al., 1992; Collins & Jones, 1997; Connell, Janevic, & Gallant, 2001; Given et al., 2004; Lawton, Rajagopal, Brody, & Kleban, 1992; Lee, Colditz, Berkman, & Kawachi, 2003; Picot, Debanne, Namazi, & Wykel, 1997; Pinquart & Sorensen, 2005; Sherwood et al., 2005).
Caregiving is an ever-changing process, and successful caregiving dyads are able to prioritize, negotiate roles, and prepare for changes. Shyu (2000) described the process of developing the caregiving role as role tuning, which involves engaging, negotiating, and settling. Caregivers often understand their experience by finding meaning, which they base on values (Ayres, 2000a, 2000b; Farran, Keane-Hagarty, Salloway, Kupferer, & Wilken, 1991). Within the process of caregiving, the type and amount of support (informal and formal) influence the experience of the caregiver (Albinsson & Strang, 2003; Holtslander, Duggleby, Williams, & Wright, 2005; Upton & Reed, 2006; Wuest, Ericson, Stern, & Irwin, 2001; Zarit, Reever, & Bach-Peterson, 1980). Williams (2005) studied the dynamics of caregiving among informal caregivers of blood and marrow transplantation recipients, identifying six energy sources for caregivers: commitment, role negotiation, expectation management, caring for self, gaining insight, and connecting with others.
Although some generalizations can be made for caregivers of all disease processes, the literature suggests that the dynamics of caregiving may differ by diagnosis. Clipp and George (1993) presented evidence that the experience of caring for a spouse with dementia results in greater deterioration of caregiver well-being than the experience of caring for a spouse with cancer. Flaskerund, Carter, and Lee (2000) found significant increases in symptoms of anxiety, anger, and sleep disturbances in caregivers of patients with cancer when compared to caregivers of patients with AIDS and dementia. Haley, LaMonde, Han, Narramore, and Schonwetter (2001) found that spousal caregivers of hospice patients with lung cancer had a similar experience with physical and mental health outcomes when compared to spousal caregivers of hospice patients with dementia. However, differences in the findings of those studies may be explained by the patient’s stage of disease when the caregiver’s experiences were described. Clipp and George (1993) studied caregivers of patients with cancer in earlier stages of disease, where the caregiving needs and symptom levels may have differed greatly from those of patients with neurologic disease. Haley et al. (2001) sampled caregivers of patients who were in hospice care regardless of diagnosis and, as a result, were more likely to require similar levels of care. Therefore, differences in the experience of caregiving across diagnoses may be explained by factors specific to the stage of the illness itself, such as symptoms, prognosis, treatment effects, and the type of care required.
Research is limited concerning the experience of caregivers of patients with primary brain tumors, a population that combines the experiences of caregivers of patients with cancer and those of patients with neurologic disease. Caregivers of patients with cancer report difficulty when patient needs require emotional support or behavioral management, and they are affected acutely by the symptoms with which the patient presents (Andrews, 2001; Bakas, Lewis, & Parsons, 2001; Biegel, Sales, & Schultz, 1991; Carey, Oberst, McCubbin, & Hughes, 1991; Given et al., 2004; Haley et al., 2001). Caregivers of patients with neurologic disease must handle extensive physical and cognitive impairment, often reporting difficulty in dealing with neuropsychiatric and behavioral symptoms (Chenoweth & Spencer, 1986; Clipp & George, 1993; De la Cuesta, 2005; Haley et al., 2001; Pinquart & Sorensen, 2003; Sherwood et al., 2005).
A qualitative study involving bereaved caregivers of patients with primary brain tumors revealed six themes involved in the caregiving experience: the work of caring, informal support, formal support, information, dealing with symptoms, and end of life (Sherwood, Given, Doorenbos, et al., 2004). Results point to major themes of the caregiving experience, although the study was limited as it only provided the perspective of bereaved caregivers reflecting on the experience. A description of the experience of current informal caregivers specific to the population of patients with primary brain tumors is needed to provide an evidence base for interventions.
This qualitative, descriptive study was modeled after the work of Williams (2005) with a population of caregivers of blood and marrow transplantation recipients. As in the original study, the current research used Story Theory (Smith & Liehr, 2003) for data collection, as well as a descriptive exploratory data analysis method (Parse, Coyne, & Smith, 1985). Qualitative research allows for the development of knowledge about human experiences from descriptions given by people (Parse, 2001). Story Theory (Liehr & Smith, 2000) defined the human story as a “health story in the broadest sense; a recounting of one’s current life situation to clarify present meaning in the context of the past, with an eye toward the future all in the present moment” (p. 14). Liehr and Smith (2000) proposed the story path as a structural method for obtaining data, where the researcher invites the caregiver to talk about the experience by focusing first on the present moment, then on the past and the importance of past experiences at the present time, and finishing the story with a focus on the future expectations for the health challenge. Although qualitative research often requires that the results are driven entirely by the data, this type of research also can be informed by theory, allowing the data to be explored with structure, while remaining open to unanticipated findings (Parse, 2001).
The Model of Informal Caregiving Dynamics was used to explore and inform the analysis of the data (Williams, 2005). In the model, commitment is defined as “enduring caregiver responsibility that inspires life changes to make the patient priority . . . whether or not they are experiencing a self-affirming loving connection with the patient” (Williams, 2007, p. 381). Expectation management involves envisioning the future and looking to return to normal or a new normal. Role negotiation is appropriate pushing by the caregiver toward patient recovery and independence while getting a handle on the care that is required. Self-care involves the action of caregivers in taking care of themselves during the experience. New insight is characterized by “changing awareness through experiencing personal growth, believing that a higher power controls the situation, and recognizing positive treatment outcomes” (Williams, 2008, p. 266). Finally, role support is caregivers finding strength through knowing others care, receiving competent care and helpful information, and finding support for other responsibilities.
The sample included 20 primary informal caregivers of patients with primary brain tumors being evaluated or treated at a National Cancer Institute–designated comprehensive cancer center in the southern United States. Purposive sampling of the patients and their informal caregivers broadened the scope of data collection and provided a wide exploration of the experience of caring for patients with brain tumors. Patients were eligible to participate if they were aged 18 years or older, English speaking, and diagnosed with a grade II–IV primary brain glioma. Caregivers were eligible to participate if they were aged 18 years or older, English speaking, and identified by patients as primary caregivers.
The institutional review board of the comprehensive cancer center and the University of Texas Health Science Center at Houston’s committee for the protection of human subjects approved the study. The researcher first contacted patients and then approached their caregivers to obtain their consents for participation in a dialogue about their caregiving story. If a caregiver agreed, a single tape-recorded interview was conducted. Open-ended questions and the methods of story path were used to guide the dialogue. Dialogues were conducted in private rooms in inpatient and outpatient areas of the cancer center by the researcher. After the dialogue was finished, the caregiver completed a sociodemographic questionnaire. The researcher then collected sociodemographic, disease, and treatment information from the patients’ health records.
Caregiver sociodemographic characteristics and patient sociodemographic and health parameters were analyzed with descriptive statistics. Transcripts of the dialogues were verified against the audio tapes by the researcher. The dynamics of caregiving and energy sources used by caregivers were described with descriptive exploratory analysis (Parse et al., 1985). The dialogues were coded into statements, and the energy sources from the Model of Informal Caregiving Dynamics were used to understand and inform the unique experience of these caregivers. For bias control and to ensure accuracy in analysis, two other researchers with experience in qualitative studies and oncology nursing were consulted in the analysis process.
Sociodemographic, disease, and treatment data for the patients (see Table 1) and sociodemographic data for the caregivers (see Table 2) were analyzed descriptively. The mean age of the patients was 48.7 years (SD = 12.5, range 22–76). For caregivers, the mean age was 51 years (SD = 10.7, range 28–74) and the mean years of education was 14.9 (SD = 2.4, range 10–20). Themes related to commitment, expectation management, role negotiation, self-care, new insight, and role support were identified in this caregiver population. Those six main energy sources were further subdivided into themes according to the Model of Informal Caregiving Dynamics (Williams, 2005) (see Table 3).
Caregivers of patients with brain tumors used the six energy sources found in the Model of Informal Caregiving Dynamics, but their use of those sources differed from caregivers of blood and marrow transplantation recipients (Williams, 2005). Although caregivers in the current study did express feelings of commitment as outlined in the model, they often reported a willingness and responsibility to endure frustrating personality changes and cognitive decline. The unpredictable and problematic behaviors that accompany cognitive and psychological decline are predictive of a negative caregiving experience (Pinquart & Sorensen, 2003; Sherwood et al., 2005). In the care of patients with cancer, caregiving tasks involving emotional support or behavioral management are reported as the most time consuming and difficult (Bakas et al., 2001; Carey et al., 1991). In the care of patients with dementia, Chenoweth and Spencer (1986) reported that the major problem faced by caregivers is the need for constant supervision. Caregivers in the current study described a dramatic change in the personality and cognitive functioning of the patients, often resulting in conflict with the patient, making it difficult to feel appreciated. Those caregivers found a self-affirming, loving connection by recognizing their own ability to manage behavioral problems, similar to findings of LoboPrabhu, Molinari, Arlinghaus, Barr, and Lomax (2005).
Caregivers managed their own expectations through recognizing the natural disease trajectory of primary brain tumors. In this population of caregivers, envisioning tomorrow actually is envisioning the eventual decline of the patient and hoping that it will be manageable. The sudden onset, quick progression, and morbidity and mortality associated with the diagnosis of primary brain tumors may contribute to this view of the future, particularly when compared to the hope expressed by caregivers of patients undergoing bone marrow transplantation, which often is seen as curative therapy (Sherwood, Given, Given, et al., 2004; Williams, 2005). Wuest, Ericson, and Stern (1994) described the concepts of holding on and letting go in the process of “becoming strangers.” Holding on involves caregivers implementing strategies to maintain a normal life and sustain the relationship, whereas letting go has been described as a dynamic process that includes the begrudging acceptance of the inevitable and then adapting to ensure the caregiver’s ability to manage the declining patient (LoboPrabhu et al., 2005; Wuest et al., 1994). The experience of becoming strangers and “letting go” is similar to the expectations of caregivers in the current study, where envisioning the future provided caregivers an opportunity to prepare for the patient’s loss of cognitive and functional abilities and eventual death. Sherwood, Given, Doorenbos, et al. (2004) described preparation for the future in this same caregiver population as an important time for caregivers to ready themselves for the care that will be necessary as the patient continues to decline and reaches the end of life.
Gauging behavior and role negotiation were difficult for the current study’s caregivers because of the cognitive and behavioral decline exhibited by the patients. Caregivers described having to relearn the patient’s personality after diagnosis and as the tumor progressed. Sherwood, Given, Doorenbos, et al. (2004) reported that loss of personhood and memory presented a challenge for caregivers of patients with primary brain tumors, who sometimes referred to care recipients as someone other than the person they knew before. In addition, caregivers in the current study and those in Sherwood, Given, Doorenbos, et al. (2004) reported concerns about safety issues, such as forgetting to turn off the stove, violent behaviors, and confusion. LoboPrabhu et al. (2005) described a process of separation-individuation that begins when caregivers must make decisions for patients with dementia, who may be unable to understand the situation. Caregivers in the current study reported a feeling of accomplishment in being able to gauge behavior, but they often described the difficulty of role negotiation, not knowing where to draw the line between patient independence and complete dependence on the caregiver. Schumacher (1996) described three patterns of caregiving dyads types: the self-care pattern, the caregiving pattern, and the collaborative pattern. Schumacher (1996) emphasized the phenomenon of shifting patterns of self-care and caregiving, describing the dynamic and fluctuating nature of informal caregiving. Caregivers in the current study reported constant reevaluating of caregiving responsibilities.
Several studies have pointed to the importance of providing support to caregivers that allows them to feel a sense of security in the healthcare team (Holtslander et al., 2005; Janda, Eakin, Bailey, Walker, & Troy, 2006; LoboPrabhu et al., 2005; Sherwood, Given, Doorenbos, et al., 2004; Sherwood, Given, Given, et al., 2004; Wuest et al., 2001). Albinsson and Strang (2003) emphasized the importance of tailoring healthcare provider support to caregivers. Families of patients with dementia need more support in the areas of respite care and overcoming guilt felt by the family, whereas families of patients with cancer need healthcare providers to be available as the disease changes rapidly. Those support needs are congruent with the individual disease process and perceived effect of the illness on the family. Caregivers in the current study were able to derive strength from their healthcare provider once they were in the position to receive competent care and helpful information from a provider who specialized in this diagnosis.
The caregivers of patients with primary brain tumors used the energy sources identified in the Model of Informal Caregiving Dynamics in a unique way. Occasionally, caregivers described their experiences and sources for motivation with a negative connotation. This may be attributed to the morbidity and mortality associated with the diagnosis of primary brain tumor, as discussed previously. The caregivers likely found meaning in their role through acknowledging the negative aspects of their experience. As described by Ayres (2000b), this realistic view of the circumstances may allow caregivers of patients with neurologic and cognitive decline to be more flexible in response to new situations or illness-related decline.
Although measures were taken to prevent researcher influence in the analysis, the biases of the researcher may have influenced study results. Additionally, the relatively high mean years of education may have contributed to a bias in the results. The study was conducted at a single comprehensive, research-driven cancer center, where patients receiving care may have expectations of exposure to clinical trials and newer treatments. Other cancer centers may manage care for patients with brain tumors and assist informal caregivers differently.
Implications for Nursing
Healthcare providers can assist caregivers of patients with primary brain tumors by understanding the energy sources the caregivers use to sustain their role. Clinicians should recognize the commitment caregivers make to endure responsibility, particularly regarding the impact of cognitive and functional decline. Wuest et al. (2001) discussed connected (helpful) support from healthcare professionals when professionals praise or validate caregiver efforts. LoboPrabhu et al. (2005) reported that clinician attention to caregivers’ frustrations and constant validation of their importance help support the caregivers’ commitment. Caregivers of patients with primary brain tumors reported gaining strength when healthcare providers acknowledged their role and allowed them to participate with the healthcare team.
Healthcare providers can further improve the caregiving experience by supporting the patients’ and the caregivers’ expectations, providing truthful, evidence-based information, and acting as a buffer to facilitate understanding through treatment twists and turns. Farran et al. (1991) identified the concept of powerlessness in caring for patients with dementia. Clinicians can provide education and support to decrease the feelings of powerlessness in caregivers, thus helping to manage expectations and build strength for current and future caregiving responsibilities.
Most caregivers in the current study expressed gratitude for the opportunity to share their story with an attentive listener, appreciating that others felt their role was important and valid. Albinsson and Strang (2003) compared the supportive needs of families of patients with dementia and patients with cancer, revealing that both groups need support in the form of listening. Healthcare providers can validate the role of caregivers by asking about their experiences and acknowledging their contribution to the patient’s well-being.
Additional studies evaluating the experience of informal caregivers of patients with primary brain tumors are needed. A longitudinal study of those caregivers would be useful to determine how their experience changes over time. Interventions based on the Model of Informal Caregiving Dynamics should be studied in this population of caregivers.
The Model of Informal Caregiving Dynamics was used to describe the experience of informal caregivers of patients with primary brain tumors through storytelling. The dialogues provided a new understanding of the elements in the model. In this population, caregivers endure the cognitive and behavioral changes accompanying this diagnosis, envision the eventual decline of the patient, gauge behavior through neuropsychiatric symptoms, and gain strength through competent health care. Healthcare providers can support caregivers by acknowledging their efforts, providing truthful information to support realistic expectations, and listening to their stories to validate the caregiving role. Future research is needed to determine the dynamics of a long-term caregiving relationship in this population and study interventions created to support those caregivers.
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Meagan Whisenant, MSN, APRN, is a PhD student in the College of Nursing at the University of Utah in Salt Lake City and a nurse practitioner at Logan Medical Center in Guthrie, OK. No financial relationships to disclose. Whisenant can be reached at email@example.com, with copy to editor at ONFEditor@ons.org. (Submitted September 2010. Accepted for publication December 11, 2010.)