Health Communication
ISSN: 1041-0236 (Print) 1532-7027 (Online) Journal homepage: http://www.tandfonline.com/loi/hhth20
Coping as a Caregiver for an Elderly Family Member Jordan M. Alpert & Frances E. Womble To cite this article: Jordan M. Alpert & Frances E. Womble (2015) Coping as a Caregiver for an Elderly Family Member, Health Communication, 30:7, 714-721, DOI: 10.1080/10410236.2013.879560 To link to this article: http://dx.doi.org/10.1080/10410236.2013.879560
Published online: 25 Jul 2014.
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Date: 05 November 2015, At: 13:07
Health Communication, 30: 714–721, 2015 Copyright © Taylor & Francis Group, LLC ISSN: 1041-0236 print / 1532-7027 online DOI: 10.1080/10410236.2013.879560
Coping as a Caregiver for an Elderly Family Member Jordan M. Alpert and Frances E. Womble
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Department of Communication George Mason University
With nearly 30% of the adult U.S. population acting as caregivers for sick, disabled, or elderly family members, it is imperative that caregivers become better equipped to cope with this challenging role. Although caregiving is regarded as an arduous endeavor, caring for an older family member may actually produce positive experiences. This study examines how caregivers use communication as a tool to cope with caring for an older family member. Over a span of 15 months, more than 150 caregiver stories were gathered from AgingCare.com, analyzed thematically, and categorized. The results show that stories utilize emotion-based techniques, including humor (20%), positive framing (16%), and acceptance (11%), to reveal that lasting, meaningful bonds can develop between caregivers and caregivers’ relatives. These techniques allow caregivers to redefine their familial role and to find comfort in disheartening situations. Thus, coping is a truly communicative event since emotions can facilitate behaviors directed at ailing family members.
According to the Administration on Aging (2013), one in eight Americans is 65 years or older. Those who reach the age of 65 have an average life expectancy of an additional 18 years, and by 2030, these older Americans are expected to reach a population of 72 million. Today, nearly 30% of the U.S. adult population acts as caregivers for sick, disabled, or elderly family members. Not only will the number of caregivers increase as people continue to live longer, but caregivers will stay in this role for longer durations. Currently, caregivers spend an average of 13 days per month shopping, preparing food, housekeeping, doing laundry, providing transportation, and administering medication. Another six days per month are spent on tasks like feeding, dressing, grooming, walking, bathing, and providing toilet assistance (Mendes, 2011). Although the role of caregiving can be both physically and mentally challenging, this study examined how caregiving narratives are a sense-making mechanism that enables positive emotion-based coping for caregivers of older family members.
Correspondence should be addressed to Jordan M. Alpert, George Mason University, Department of Communication, 4400 University Drive, MSN 3D6, Fairfax, VA 22030. E-mail: [email protected]
LITERATURE REVIEW Challenges of Caregiving Family caregivers are defined as family members, friends, neighbors, or other individuals who conduct the majority of a patient’s home care needs without financial reward (Cameron, Franche, Cheung, & Stewart, 2002). Generally, they do not have any formal training, nor do they have the skills or necessary experience to handle such an endeavor (Gitlin & Schulz, 2012; Pecchioni, Wright, & Nussbaum, 2005). Due to this enormous responsibility, caregivers typically experience high levels of stress, burden, and declining mental health (Semlak & Pearson, 2011). Similarly, Haley, Levine, Brown, and Bartolucci (1987) found that caregivers experience more depression compared to noncaregivers. In addition to decreased psychological health, caregiving is related to negative effects on physical health (Pinquart & Sörensen, 2007). Mental and emotional strain contributes to diminished physical health because caregivers are less likely to get proper rest, exercise, and set aside time for their own health (Schulz et al., 1997). In fact, caregivers who report strain associated with caregiving had mortality rates
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63% higher than non-caregivers (Schulz & Beach, 1999). Therefore, it is important for caregivers to develop a communicative coping strategy to combat the stress of their roles.
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Caregiving and Coping Given the emotional and physical risk factors associated with caregiving, it is not surprising that the job is often portrayed as ill-fated. Although positive aspects of caregiving exist, they are often ignored (Kramer, 1997; Miller, Shoemaker, Willyard & Addison, 2008). This is largely because research focuses on the number of roles a caregiver occupies rather than the quality of experiences that transpires from multiple roles, known as the competing-demands hypothesis (Stephens & Franks, 2009). Conversely, the role-quality perspective proclaims that rewards should be considered along with problems that are encountered (Barnett & Baruch, 1985). For instance, family caregivers of dementia patients received greater satisfaction from increased involvement (Kinney & Stephens, 1989) and became closer to the care receiver (Peacock et al., 2010). Caregivers are able to discover positive aspects of caregiving through coping, which is defined as “constantly changing cognitive and behavioral efforts to manage specific external and/or internal demands that are appraised as taxing or exceeding the resources of the person” (Lazarus & Folkman, 1984, p. 141). The ways caregivers cope with stress is essential to their effectiveness in terms of quality of life, for both the patient and the caregiver (Kristofferzon, Linqvist & Nilsson, 2011). Lazarus and Folkman (1984) suggested a coping approach that involved two methods: emotion-focused coping and problem-focused coping. Emotion-focused coping is the attempt to reduce emotional consequences of stressful events through positive or negative reinterpretations of those events (Lazarus & Folkman, 1984). While problem-focused coping is external and visible, emotion-based coping is more internal, and therefore often goes unnoticed. Emotion-based coping also lends itself to the use of narratives, since storytelling is often utilized as a sense-making therapeutic tool (Japp & Beck, 2005). Sense-making. Before a caregiver can form a positive or negative interpretation, the caregiver must mentally navigate, or make sense of, the new situation. Sense-making is a strategy in which an individual grasps a harrowing event and determines how to deal with unanswered questions about the future (Janoff-Bulman & Yopyk, 2004). By using sense-making, the caregiver incorporates the illness into life and accepts the new reality by reconstructing values and goals (Pakenham, 2010). This was exemplified in a study by Langner (1995), which found that caregivers rediscovered a sense of self, and felt satisfaction and an enhanced self-worth by focusing on the meaning of their experiences, rather than focusing on stress. Sense-making as a communicative coping mechanism has been employed in several health-related contexts, such
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as bereavement (Bosticco & Thompson, 2005) and diagnoses of developmental disorders in children (Pakenham, Sofronoff & Samios, 2004). For family caregivers, sensemaking is a common practice because it is often necessary to persist in administering care while grieving the loss of a relationship. One particular process of sense-making is managing roles, which connects to role theory. The theory states that individuals are born into and choose roles within the family (Phillips, 1957), and each role comes with acceptable behaviors, norms, and expectations (Mui, 1992). However, as people grow older, roles may change and even be reversed (Phillips, 1957). This can be a challenging experience that adds additional stress to the already demanding caregiving role (Pruchno & Resch, 1989), especially if the caregiver feels as if the role was forced upon him or her (Mui, 1992). Through sense-making, coming to terms with caring for an ailing family member can reveal itself in a number of ways, including humor and the use of narratives. Humor. The expression, “laughter is the best medicine,” has been supported by researchers who continue to show the benefits of humor to help improve the lives of older adults (Sparks Bethea, 2001). Recently, more attention has been placed on humor as a coping strategy because it is a safe way for caregivers to share experiences that are challenging, frustrating, or even dangerous (Peacock et al., 2010). Due to its positive impact on older adults, humor has the ability to be a powerful emotional-coping mechanism even though there is little empirical evidence that examines humor as a sense-making tool. Narratives. Narratives are another tactic used to navigate the sense-making and role renegotiation processes. They are defined as “public and personal stories that we subscribe to and that guide our behavior” (Baker, 2006, p. 19). Narratives are largely used as a sense-making tool during traumatic and stressful events (Harter, Japp, & Beck, 2005) because they are a form of emotion-centric coping that focuses on easing emotional suffering (Lazarus & Folkman, 1984). Caregiving narratives are particularly important for communication scholars because they include emotionalbased issues of identity loss, order and chaos, and anger and compassion (Harter, Japp, & Beck, 2005). Engaging in narratives allows the caregiver to give meaning to the experience and serves as a mediator between thoughts, feelings, and actions (Garro & Mattingly, 2000) as caregivers normalize new behaviors and alter expectations. The thoughtful selection of describing an emotion or event has the ability to be a powerful coping technique. This was demonstrated by Ramirez-Esparza and Pennebaker (2006), who found that narratives using positive-emotion words improved the health of the writer and resulted in fewer physician visits. Due to the ubiquity of the Internet, the ability to produce and share a narrative with others is easy. More than half of caregivers with Internet access say that online resources have assisted their ability to cope with their
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role as a caregiver (Fox, Duggan & Purcell, 2013). Online networks “provide new avenues of social support” (Dutta & Feng, 2007, p. 181) and allow caregivers the option of anonymity, which may allow caregivers to feel uninhibited and disclose more since their identity is unknown (Tanis, Das & Fortgens-Sillmann, 2011). Additionally, caregivers are able to ask questions and learn about possible solutions from other caregivers with similar experiences (Tanis, Das, & Fortgens-Sillmann, 2011) and how they understand their altered roles, which provides mental health benefits (Green-Hamann, Eichhorn & Sherblom, 2011).
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RESEARCH QUESTIONS Since the number of caregivers continues to rise and online social support is becoming more widespread, this article focuses on documented stories of caregivers’ experiences. Using stories written on a website called AgingCare.com, narrative accounts are analyzed to answer the following research questions: RQ1: Which coping techniques are utilized most by caregivers tending to an elderly family member? RQ2: How do coping methods further broaden the caregiver’s perspective of their role?
METHODS Population AgingCare.com is a website that provides information for caregivers of elderly family members. The website generates more than 6 million visitors per year, who are, on average, 54 years old and caring for an elderly family member who is an average of 81 years old. According to the website, 83% of visitors are female. AgingCare.com has a section on its website called “Caregiver Stories,” with the following description: Unexpected moments are common in caregiving, whether humorous, inspiring or embarrassing, they happen to all caregivers. Caregiver Stories is a place to share your stories and read other caregivers’ stories.
Since narratives have been shown to be a beneficial emotionbased coping technique for caregivers, the researchers were interested in the manner in which website visitors shared their own caregiving narratives. Visitors had a maximum limit of 400 characters. The brevity of stories compels caregivers to choose their words carefully and only include the most notable accounts of their experiences. This study analyzes stories posted between January 1, 2012, and April 2, 2013.
Classification Schema Recognizing that caregivers experience an array of emotions, Gottlieb and Gignac (1996) created a classification of coping categories based on caregivers of family members with dementia. Adaptability, general distress, and physical health are the three main measures used in the study to examine the relationship between coping techniques, health, and morale. In total, 11 main classes were established, which included making meaning, acceptance, positive framing, wishful thinking, avoidance/escape, vigilance, emotional expression/inhibition, future expectancies, humor, help-seeking, and symptom management. Sample Each individual story serves as a unit of analysis (one data point) in the study, and each story was read to determine whether a stated relationship was present. For instance, a story had to cite whether care was given to a mother, father, husband, wife, or other family member. If a story did not explicitly state the relationship, it was not used in the study. In addition, to avoid duplicate postings, all stories used were from unique user names and therefore individuals. Demographics The authors attempted to identify the gender of the caregivers writing these stories, but very few were identifiable since website users post under a distinct username. Members have profiles, but few disclosed their gender or other personal characteristics. Since AgingCare.com states that most of their visitors are women, it is assumed that most caregivers writing stories are also women, but it was not possible to confirm. In addition, a large portion of the stories do not reference a specific illness or disease. Of those that did, about a quarter (25.3%) mentioned Alzheimer’s disease or dementia, 6% cited a stroke, and 5% cancer. Others mentioned were diabetes, chronic obstructive pulmonary disease, and physical disablement. Analytical Process In total, 155 stories were collected, and 154 stories were evaluated using Gottlieb and Gignac’s (1996) classification scheme. The one story that was not used described the ordeal of an employee stealing money from her mother before she passed away. Since only the details of the subsequent trial were described and the writer’s mother was not mentioned, this was not classified as a story that involved caregiving coping. The constant comparative method, developed by Glaser and Strauss (1967), was used as the primary method for data analysis. As a first step, the authors reviewed Gottlieb and Gignac’s (1996) scheme and discussed how they would
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interpret each class and subcategory. By going through this exercise, the authors were able to articulate to one another how they would assign meaning to each story. Then, every story was read and labeled independently. As many as four classes and subcategories were assigned to each story by each author. In order to ensure credibility of the original scheme, the authors revealed their choices to one another and discussed the rationale for choosing the particular class and subcategory. This process occurred individually for every story. If there was disagreement after the initial review, a discussion took place between the authors. All stories without agreement were marked and set aside. At a later date, the authors reread and individually coded the stories again and began the same process as previously mentioned. Eventually, each story was assigned one primary label that both authors agreed upon. Once all the stories were classified and labeled, individual stories were then reviewed from each class and subcategory to ensure that none were incompatible.
RESULTS Caregiving Coping Mechanism Using Gottlieb and Gignac’s (1996) classification scheme, the most common class of narratives utilized emotion-based coping techniques. Addressing RQ1, which focused on the particular coping technique used by caregivers, the use of humor accounted for 20% of all stories, followed by positive framing (16%) and acceptance (11%). When only subcategories were analyzed, laughter, which falls under the main humor class, was the most cited story classification with 18% of total stories. Only four stories were classified as teases, the other subcategory of humor. Focuses on positives, a subcategory of positive framing, was the second most cited overall classification with 13%, followed by accepts the necessity of continuing involvement (6%), a subcategory of acceptance. Symptom management (11%) was an instrumental coping technique and its accompanying subcategory, physically assists/steers, registered only 3% of all stories. Future expectancies garnered 10% and the subcategory of pessimistic/fearful accounted for 6%. Table 1 lists the top five classes along with their most cited subcategory. Relationship An overwhelming majority (87%) of stories involved people taking care of parents (mothers, fathers, in-laws). More than half of the caregivers who wrote a story were taking care of their mother exclusively (55%). If scenarios of caregivers looking after mothers and additional family members were considered, then 62% of stories involved tending to a mother. Other relationships included taking care of a father (17%), spouse (7%), and grandparents (4%).
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TABLE 1 Prevalence of Coping Class and Subcategory
Class and Subcategory Humor Laughter Positive framing Focuses on positives Acceptance Accepts necessity of continuing involvement Symptom management Physically assists/steers Future expectancies Pessimistic/fearful
Number of Stories
Percent of Stories
31 27 24 20 17 9 17 4 16 10
20% 18% 16% 13% 11% 6% 11% 3% 10% 6%
Category Analysis This section addresses how these coping methods further broaden the caregivers’ perspectives of their roles. The top three categories (humor, positive framing, and acceptance) are examined exclusively. These emotion-focused techniques account for almost half of all entries (47%). By focusing on these narratives through a sense-making context, insights show how caregiving can be a complex, yet enriching, experience. Humor. Typically, one does not associate humor with illness, but it can bring levity to an otherwise serious situation and offers caregivers a temporary sense of relief. Those outside the caregiving role may find these situations shameful or embarrassing, making it difficult to picture the scenarios in a positive light. Yet, caregivers using humor as a coping strategy focus on the silver lining. One caregiver writes1 : Mom sometimes has “turd” issues. The other morning she got up and put on a new pretty blue sundress. I was changing her linens and looked at her side and said. “ aw, mom, you have poop on your dress”. Then I looked closer and said “ no, it’s just brown wooden buttons”. She looked down at the buttons and just cracked up. Then I cracked up. It was so funny. we laughed until we cried.
As the preceding story illustrates, narratives invoking humor can be used as a tool to deal with embarrassing situations. Here, the caregiver assumes the parental role and gently alerts her mother that she may have put on a dirty dress. They can laugh at the situation because in that brief instance, the role reversal is blatantly revealed. Instead of a negative reaction, both women understand one another’s viewpoint and have no other choice but to laugh at where life has taken them. Similar to dealing with uncomfortable situations, stories involving humor encouraged the caregiver to embrace the 1 To maintain the authenticity of participants’ stories, all featured quotes are presented without changes for spelling and grammar.
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illness. In the following story, a caregiver welcomes her unusual role instead of surrendering to the difficulties of the disease:
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I am a part time caregiver to my Mom who suffered a brain stem stroke that left her physically disabled and also has OCD and possible dementia and a full time caregiver to my 16 year old daughter who has mental retardation and OCD -tics-ODD.. When I take them shopping people think I run a group home. When we go out to eat it looks like we had a food fight. I get farted on a lot. But I love it!
The online forum affords this caregiver an opportunity to document a narrative expressing her immense responsibility. Through sense-making, she is able to normalize the chaos experienced in her day-to-day routine and still finds it amusing. Instead of viewing the situation as a burden, errands are portrayed as meaningful events, which provide pride and energy to continue doing them. Sincere acknowledgement is another way to look at how caregivers humorously cope with the effects of disease. In the next example, a mother recognizes the need for her daughter’s assistance while communicating with health providers: saw Mom last night. And was trying to get the RN to understand that Mom cannot relay info to me from the Doc. I told the RN that im Moms POA and the Dr needs to call me with updates. Mom said “ya, have him call her, cause i cant remember sh∗∗ anymore”.. love the uphoric mania days
The mother’s unashamed admission of her poor memory blithely relinquishes the parental role to her daughter. This narrative demonstrates how a casual remark is treated as a communicative device that symbolizes transference of authority between mother and daughter, solidifying their redefined roles. Positive framing. The ability to temporarily escape the arduous role of caregiving to relive happier moments was a salient theme within the positive framing category. Viewing situations with optimism offers caregivers a break from an otherwise demoralizing lifestyle. These seemingly ordinary moments could have easily been overlooked and negatively colored by the disease, but instead, they demonstrate how caregivers are able to block out adversity, focus on memorable moments and re-connect with their family members. One caregiver writes: A delightful day last week. Mom believed the Queen of England was coming for a visit because she heard Mom was not feeling well.. We had a tea party in perfect British fashion all dressed in our prettiest pink finery. I used Mother’s tea set from her childhood and all the special touches HER mother taught us both. What a gift.
The author never mentions the illness her mother is suffering from, nor does she frame the story as a symptom of disease. The word “her” is capitalized for emphasis and
refers to the caregiver’s grandmother, which indicates how important it is to pass on family traditions. In addition, caring for her mother is viewed as a gift rather than a burden. By framing the narrative positively, an extremely meaningful event occurred that linked several generations and enabled the caregiver to experience a slice of her childhood again. The next narrative demonstrates how assuming the role of caregiver assisted in restoring the relationship between a daughter and her mother: My mom has been in the nursing home rehab for over a month now, private room doing very well. She will be staying when she is done. She will be moved to a smaller room with a roommate. She has come a long way and even laughs now, we have laughed together a lot. It has been years since we have done that.
This narrative indicates that it has been difficult for both the caregiver and mother to endure the rehabilitation process. The narrative is used to reflect upon the relationship and to make sense of the progress that has been made. The caregiver is now able to focus on enjoying their current time together and chooses positive emotion words to signify the meaning of their renewed relationship. Narratives in the positive framing category often revealed how caregivers were able to confirm their self-worth and get satisfaction out of providing assistance. For example: My Mom is almost 92 and able to still bathe herself, keep track of her meds, and is living in a retirement facility. I understand everyone has totally different circumstances. It is hard to be responsible for someone else and totally understand if you need to pay yourself. My Mom has me drive her to dentist and doctor appointments. My Mom also likes to go to lunch and this is how she pays me!
This narrative exemplifies how stories can be used as communicative tools to share experiences and to encourage the online community to consider focusing on the positive aspects of caregiving. By utilizing sense-making, the caregiver truly enjoys the time spent with her mother and appreciates her mother’s relative good health while acknowledging that others in the forum may not be as fortunate in their roles and situations. Acceptance. Accepting caregiving duties is a continuous process that evolves as the disease and its effects constantly change. For some, caregiving is a recent development and a new reality one must become accustomed to. Others have been caregivers for an extended period of time but still struggle to find balance. Although acceptance is classified as a positive category, the nature of this behavior slightly skews in the negative direction, especially when compared to humor and positive framing. Although some caregivers may not enjoy the role of caregiving, they understand that if they do not provide care, no one else will. For some people, taking on the responsibility of giving care is
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simply the right thing to do. One caregiver described the following situation: My ex MIL (yes, I said EX) is an assisted living facility and I am her main caregiver . Her two adult children have all but disappeared. She has suffered her 2nd stroke, but is otherwise healthy. She is 79. MD has put her on palliative care treatment. I want a clear conscience when she passes that I have done everything that I should have.
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This caregiver appears to be utilizing the narrative as a device to reaffirm accepting the role of caregiver and to make sense of the situation. She accepts that the responsibility to take care of her mother-in-law has been bequeathed upon her and is determined to do the right thing. Another writes: I have been helping my parents since I was in my twenties due to them being older. In the beginning it was mainly financial but then the last 10 years have been medically. I don’t regret any of it and I know my siblings wouldn’t do it. My siblings still act like she doesn’t need assistance. My father died in 2008, I realize how much he did because since he died I have my hands full.
Having been thrust into being a caregiver, a retrospective sense-making approach is taken, in which the caregiver understands that it was necessary to fulfill the role. Although the story suggests that there is resentment toward siblings, the caregiver willingly assumed the role and is the only family member who understands the devotion necessary to be a caregiver. Looking back upon the last 10 years, the caregiver does not have regret, indicating that this person would do it all over again if he or she could. The next story illustrates the complexities involved with accepting the position of caregiver: I might be different than most. I don’t like my mother as a person. She has not been a support to me when my husband died, or I had cancer, and other things like that. She has always been self-centered. The more I read about Narcissism, the more I realize that is and has been her main problem. Even though I don’t like her, I must love her since I take care of her 24/7. She is 91 now.
Despite a difficult relationship, this caregiver puts aside past transgressions and finds a way to rationalize why she provides continuous care. It is not an ideal situation, but as her mother’s daughter, the role requires that she provides assistance. Despite the ominous tone of the narrative, choosing to use the words “I must love her” is significant because she accepts that in order to provide care, love must be involved.
DISCUSSION This study revealed several positive emotions that emerge from the role of caregiving and how they are used for coping. Interwoven within the sorrow of attending to a suffering family member are feelings of hope and comfort, expressed
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through the use of humor, positive framing, and acceptance. In addition to Langner’s (1995) findings that caregivers for aging relatives feel satisfaction and rediscover a sense of self and an enhanced self-worth, this study finds that caregivers reconnect with family members through the redefinition of relationships and roles as described through their narratives. The results show that although positive aspects of caregiving have been recognized, even more attention is warranted on the subject. Understanding how positive beliefs and behavior can enhance coping skills will make caregiving responsibilities less challenging. Humor is the most employed coping technique. The narratives illustrate that it is not just laughing or making jokes, but a coping mechanism enabling understanding of how to deal with a difficult situation. Sometimes, caregivers face a balancing act that often mimics feelings and frustrations that parents of young children experience (Miller et al., 2008). As the results indicate, caregiving means traditional parent– child norms and expectations must be relinquished. This can be demonstrated through the use of humor as a sensemaking tool as roles are reversed. Similarly, focusing on emotion-based coping strategies allows caregivers to separate rewarding moments from the hardships of their duties. Channeling positive emotions through expressions of narratives helps to facilitate new perceptions of the relationship and the possibility for more meaningful moments in the future. In addition to humor, accepting caregiving responsibility means altering one’s communicative style and adapting to a new familial role. Acceptance serves as a vehicle that helps caregivers come to grips with new circumstances and allows them to move forward, rather than dwelling on losses (Carver, Scheier & Pozo, 1992), while adjusting to a new role. Sense-making allows for a different mind set to emerge because children, spouses, and other family members must disassociate themselves from their familial role and focus on the job of providing care. It has been shown that setting boundaries and detaching from the need to control outcomes is an important balancing technique for caregivers (Carmack, 1997). The detachment technique can only be effectively employed once a caregiver has accepted the new reality. Results of this study show that although a small number of caregivers complained about caregiving chores, they were still dedicated to their family members and understood that providing care was a necessity. In fact, many caregivers were able to reconnect with family members, putting aside past grievances to develop new relationships. Most caregivers chose to positively frame their experiences. This occurred through sense-making and was communicated through the use of narratives that illustrate how caregivers relished the unique experience this time afforded. Similar to cases of bereavement and diagnoses of children’s developmental disorders, sense-making is an effective coping technique for positive framing because it allows stress
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to be replaced with other positive emotions. Therefore, caregivers are able to understand the complexities of their responsibilities and find ways to make the experience as fulfilling as possible. The fact that caregivers chose a positive story about their relationship shows that they are not allowing the disease to infect them and are still finding ways to enjoy time with their family members. Coping techniques like humor, acceptance, and positive framing have not been deeply analyzed because they are usually seen as psychological or sociological variables. Examining coping techniques through a communication framework shows that they are filled with multiple layers that function as powerful coping tools. The ability to communicate complicated emotions demonstrates that a technique like humor is not just laughter, but rather a method used to help caregivers get through the day and appreciate time spent with family members. Coping, therefore, is very much a communicative event because the ways that emotions and language are framed internally become the behaviors in which they are expressed externally. LIMITATIONS AND IMPLICATIONS FOR FUTURE RESEARCH A limitation of this study is using a sample that may be more introspective about providing care than typical caregivers, by choosing to share a story online. Furthermore, in the “Caregiver Stories” section of the website, the description states that stories are usually “humorous, inspiring or embarrassing.” This statement may suggest the type of content that is appropriate, thereby influencing or constraining caregivers to frame their narratives to be consistent with the rest of the online community. Another limitation is that it is not possible to complete an exhaustive analysis without a full demographic portrait of caregiver characteristics. Demographic data would make it possible to determine whether a specific group gravitates toward a unique coping mechanism. For instance, wealthy caregivers may utilize different coping techniques than less affluent caregivers who have to devote more time and energy to giving care. In addition, different styles of coping may also be present due to gender differences or diagnosis. Analyzing less studied individuals, like male caregivers or those who suffer from chronic and autoimmune diseases, may provide new insights into the ways caregivers cope with their roles.
CONCLUSION Despite the emotional challenges, physical limitations, and financial struggles, most caregivers focus on the positive aspects of the role instead of being pessimistic. Through communicative methods, the daunting task of caring for a family member while not becoming overwhelmed with sorrow and stress becomes attainable. Sense-making,
combined with emotion-based coping, allows a caregiver to see through depressing and embarrassing occasions and serves as a reminder that the caregiver’s sick family member is still worth caring for, even if he or she is not the same person he or she used to be. The large percentage of positive coping techniques used shows that caregiving does not have to be a lugubrious task. Through the use of communicative coping techniques, caregiving can be an opportunity to deepen relationships and harvest unexpected rewards, instead of being associated with loss and sorrow.
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COPING AS A CAREGIVER Janoff-Bulman, R. & Yopyk, D.J. (2004). Random outcomes and valued commitments. In J. Greenberg, S. L. Koole, & T. Pyszczynski (Eds.), Handbook of experimental existential psychology (pp. 122–138). New York, NY: Guilford Press. Kramer, B. J. (1997). Gain in the caregiving experience: Where are we? What next? The Gerontologist, 37, 218–232. Kinney, J. M., & Stephens, M. A. P. (1989). Hassles and uplifts of giving care to a family member with dementia. Psychology and Aging, 4, 402– 408. Kristofferzon, M., Lindqvist, R., & Nilsson, A. (2011). Relationships between coping, coping resources and quality of life in patients with chronic illness: A pilot study. Scandinavian Journal of Caring Sciences, 25, 476–483. Langner, S. R. (1995). Finding meaning in caring for elderly relatives: Loss and personal growth. Holistic Nursing Practice, 9, 75–84. Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. New York, NY: Springer. Mendes, E. (2011). Most caregivers look after elderly parent; invest a lot of time. GALLUP. Retrieved from http://www.gallup.com/poll/148682/ Caregivers-Look-Elderly-Parent-Invest-Lot-Time.aspx Miller, K. I., Shoemaker, M. M., Willyard, J., & Addison, P. (2008). Providing care for elderly patients: A structurational approach to family caregiver identity. Journal of Family Communication, 8, 19–43. Mui, A. C. (1992). Caregiver strain among Black and White daughter caregivers: A role theory perspective. Gerontologist, 32, 203–212. Pakenham, K. I. (2010). Benefit-finding and sense-making in chronic illness. In S. Folkman (Ed.), The Oxford handbook of stress, health, and coping (pp. 242–268). New York, NY: Oxford University Press. Pakenham, K. I., Sofronoff, K., & Samios, C. (2004). Finding meaning in parenting a child with Asperger syndrome: Correlates of sense making and benefit finding. Research in Developmental Disabilities, 25, 245–264.
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Peacock, S., Forbes, D., Markle-Reid, M., Hawranik, P., Morgan, D., Jansen, L., . . . Henderson, S. R. (2010). The positive aspects of the caregiving journey with dementia: using a strengths-based perspective to reveal opportunities. Journal of Applied Gerontology, 29, 640–659. Pecchioni, L. L., Wright, K. B., & Nussbaum, J. F. (2005). Life-span communication. Mahwah, NJ: Lawrence Erlbaum Associates. Phillips, B.S. (1957). A role theory approach to adjustment in old age. American Sociological Review, 22, 212–217. Pinquart, M., & Sörensen, S. (2007). Correlates of physical health of informal caregivers: A meta-analysis. Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 62, P126–P137. Pruchno, R. A., & Resch, N. L. (1989). Husbands and wives as caregivers: Antecedents of depression and burden. Gerontologist, 29, 159–165. Ramirez-Esparza, N., & Pennebaker, J. W. (2006). Do good stories produce good health? Exploring words, language and culture. Narrative Inquiry 16, 211–219. Schulz, R., & Beach, S. R. (1999). Caregiving as a risk factor for mortality. Journal of the American Medical Association, 282, 2215–2219. Schulz, R., Newsom, J., Mittelmark, M., Burton, L., Hirsch, C., & Jackson, S. (1997). Health effects of caregiving: The caregiver health effects study: An ancillary study of the cardiovascular health study. Annals of Behavioral Medicine, 19, 110–116. Sparks Bethea, L. (2001). The function of humor within the lives of older adults. Qualitative Research Reports in Communication, 2, 49–56. Stephens, M. A. P., & Franks, M. M. (2009). All in the family: Providing care to chronically ill and disabled older adults. In S. H. Quails & S. H. Zarit (Eds.), Aging families and caregiving (pp. 61–84). Hoboken, NJ: John Wiley & Sons, Inc. Tanis, M., Das, E., & Fortgens-Sillmann, M. (2011). Finding care for the caregiver? Active participation in online health forums attenuates the negative effect of caregiver strain on wellbeing. Communications, 36, 51–66.
ISSN: 1041-0236 (Print) 1532-7027 (Online) Journal homepage: http://www.tandfonline.com/loi/hhth20
Coping as a Caregiver for an Elderly Family Member Jordan M. Alpert & Frances E. Womble To cite this article: Jordan M. Alpert & Frances E. Womble (2015) Coping as a Caregiver for an Elderly Family Member, Health Communication, 30:7, 714-721, DOI: 10.1080/10410236.2013.879560 To link to this article: http://dx.doi.org/10.1080/10410236.2013.879560
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Date: 05 November 2015, At: 13:07
Health Communication, 30: 714–721, 2015 Copyright © Taylor & Francis Group, LLC ISSN: 1041-0236 print / 1532-7027 online DOI: 10.1080/10410236.2013.879560
Coping as a Caregiver for an Elderly Family Member Jordan M. Alpert and Frances E. Womble
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Department of Communication George Mason University
With nearly 30% of the adult U.S. population acting as caregivers for sick, disabled, or elderly family members, it is imperative that caregivers become better equipped to cope with this challenging role. Although caregiving is regarded as an arduous endeavor, caring for an older family member may actually produce positive experiences. This study examines how caregivers use communication as a tool to cope with caring for an older family member. Over a span of 15 months, more than 150 caregiver stories were gathered from AgingCare.com, analyzed thematically, and categorized. The results show that stories utilize emotion-based techniques, including humor (20%), positive framing (16%), and acceptance (11%), to reveal that lasting, meaningful bonds can develop between caregivers and caregivers’ relatives. These techniques allow caregivers to redefine their familial role and to find comfort in disheartening situations. Thus, coping is a truly communicative event since emotions can facilitate behaviors directed at ailing family members.
According to the Administration on Aging (2013), one in eight Americans is 65 years or older. Those who reach the age of 65 have an average life expectancy of an additional 18 years, and by 2030, these older Americans are expected to reach a population of 72 million. Today, nearly 30% of the U.S. adult population acts as caregivers for sick, disabled, or elderly family members. Not only will the number of caregivers increase as people continue to live longer, but caregivers will stay in this role for longer durations. Currently, caregivers spend an average of 13 days per month shopping, preparing food, housekeeping, doing laundry, providing transportation, and administering medication. Another six days per month are spent on tasks like feeding, dressing, grooming, walking, bathing, and providing toilet assistance (Mendes, 2011). Although the role of caregiving can be both physically and mentally challenging, this study examined how caregiving narratives are a sense-making mechanism that enables positive emotion-based coping for caregivers of older family members.
Correspondence should be addressed to Jordan M. Alpert, George Mason University, Department of Communication, 4400 University Drive, MSN 3D6, Fairfax, VA 22030. E-mail: [email protected]
LITERATURE REVIEW Challenges of Caregiving Family caregivers are defined as family members, friends, neighbors, or other individuals who conduct the majority of a patient’s home care needs without financial reward (Cameron, Franche, Cheung, & Stewart, 2002). Generally, they do not have any formal training, nor do they have the skills or necessary experience to handle such an endeavor (Gitlin & Schulz, 2012; Pecchioni, Wright, & Nussbaum, 2005). Due to this enormous responsibility, caregivers typically experience high levels of stress, burden, and declining mental health (Semlak & Pearson, 2011). Similarly, Haley, Levine, Brown, and Bartolucci (1987) found that caregivers experience more depression compared to noncaregivers. In addition to decreased psychological health, caregiving is related to negative effects on physical health (Pinquart & Sörensen, 2007). Mental and emotional strain contributes to diminished physical health because caregivers are less likely to get proper rest, exercise, and set aside time for their own health (Schulz et al., 1997). In fact, caregivers who report strain associated with caregiving had mortality rates
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63% higher than non-caregivers (Schulz & Beach, 1999). Therefore, it is important for caregivers to develop a communicative coping strategy to combat the stress of their roles.
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Caregiving and Coping Given the emotional and physical risk factors associated with caregiving, it is not surprising that the job is often portrayed as ill-fated. Although positive aspects of caregiving exist, they are often ignored (Kramer, 1997; Miller, Shoemaker, Willyard & Addison, 2008). This is largely because research focuses on the number of roles a caregiver occupies rather than the quality of experiences that transpires from multiple roles, known as the competing-demands hypothesis (Stephens & Franks, 2009). Conversely, the role-quality perspective proclaims that rewards should be considered along with problems that are encountered (Barnett & Baruch, 1985). For instance, family caregivers of dementia patients received greater satisfaction from increased involvement (Kinney & Stephens, 1989) and became closer to the care receiver (Peacock et al., 2010). Caregivers are able to discover positive aspects of caregiving through coping, which is defined as “constantly changing cognitive and behavioral efforts to manage specific external and/or internal demands that are appraised as taxing or exceeding the resources of the person” (Lazarus & Folkman, 1984, p. 141). The ways caregivers cope with stress is essential to their effectiveness in terms of quality of life, for both the patient and the caregiver (Kristofferzon, Linqvist & Nilsson, 2011). Lazarus and Folkman (1984) suggested a coping approach that involved two methods: emotion-focused coping and problem-focused coping. Emotion-focused coping is the attempt to reduce emotional consequences of stressful events through positive or negative reinterpretations of those events (Lazarus & Folkman, 1984). While problem-focused coping is external and visible, emotion-based coping is more internal, and therefore often goes unnoticed. Emotion-based coping also lends itself to the use of narratives, since storytelling is often utilized as a sense-making therapeutic tool (Japp & Beck, 2005). Sense-making. Before a caregiver can form a positive or negative interpretation, the caregiver must mentally navigate, or make sense of, the new situation. Sense-making is a strategy in which an individual grasps a harrowing event and determines how to deal with unanswered questions about the future (Janoff-Bulman & Yopyk, 2004). By using sense-making, the caregiver incorporates the illness into life and accepts the new reality by reconstructing values and goals (Pakenham, 2010). This was exemplified in a study by Langner (1995), which found that caregivers rediscovered a sense of self, and felt satisfaction and an enhanced self-worth by focusing on the meaning of their experiences, rather than focusing on stress. Sense-making as a communicative coping mechanism has been employed in several health-related contexts, such
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as bereavement (Bosticco & Thompson, 2005) and diagnoses of developmental disorders in children (Pakenham, Sofronoff & Samios, 2004). For family caregivers, sensemaking is a common practice because it is often necessary to persist in administering care while grieving the loss of a relationship. One particular process of sense-making is managing roles, which connects to role theory. The theory states that individuals are born into and choose roles within the family (Phillips, 1957), and each role comes with acceptable behaviors, norms, and expectations (Mui, 1992). However, as people grow older, roles may change and even be reversed (Phillips, 1957). This can be a challenging experience that adds additional stress to the already demanding caregiving role (Pruchno & Resch, 1989), especially if the caregiver feels as if the role was forced upon him or her (Mui, 1992). Through sense-making, coming to terms with caring for an ailing family member can reveal itself in a number of ways, including humor and the use of narratives. Humor. The expression, “laughter is the best medicine,” has been supported by researchers who continue to show the benefits of humor to help improve the lives of older adults (Sparks Bethea, 2001). Recently, more attention has been placed on humor as a coping strategy because it is a safe way for caregivers to share experiences that are challenging, frustrating, or even dangerous (Peacock et al., 2010). Due to its positive impact on older adults, humor has the ability to be a powerful emotional-coping mechanism even though there is little empirical evidence that examines humor as a sense-making tool. Narratives. Narratives are another tactic used to navigate the sense-making and role renegotiation processes. They are defined as “public and personal stories that we subscribe to and that guide our behavior” (Baker, 2006, p. 19). Narratives are largely used as a sense-making tool during traumatic and stressful events (Harter, Japp, & Beck, 2005) because they are a form of emotion-centric coping that focuses on easing emotional suffering (Lazarus & Folkman, 1984). Caregiving narratives are particularly important for communication scholars because they include emotionalbased issues of identity loss, order and chaos, and anger and compassion (Harter, Japp, & Beck, 2005). Engaging in narratives allows the caregiver to give meaning to the experience and serves as a mediator between thoughts, feelings, and actions (Garro & Mattingly, 2000) as caregivers normalize new behaviors and alter expectations. The thoughtful selection of describing an emotion or event has the ability to be a powerful coping technique. This was demonstrated by Ramirez-Esparza and Pennebaker (2006), who found that narratives using positive-emotion words improved the health of the writer and resulted in fewer physician visits. Due to the ubiquity of the Internet, the ability to produce and share a narrative with others is easy. More than half of caregivers with Internet access say that online resources have assisted their ability to cope with their
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role as a caregiver (Fox, Duggan & Purcell, 2013). Online networks “provide new avenues of social support” (Dutta & Feng, 2007, p. 181) and allow caregivers the option of anonymity, which may allow caregivers to feel uninhibited and disclose more since their identity is unknown (Tanis, Das & Fortgens-Sillmann, 2011). Additionally, caregivers are able to ask questions and learn about possible solutions from other caregivers with similar experiences (Tanis, Das, & Fortgens-Sillmann, 2011) and how they understand their altered roles, which provides mental health benefits (Green-Hamann, Eichhorn & Sherblom, 2011).
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RESEARCH QUESTIONS Since the number of caregivers continues to rise and online social support is becoming more widespread, this article focuses on documented stories of caregivers’ experiences. Using stories written on a website called AgingCare.com, narrative accounts are analyzed to answer the following research questions: RQ1: Which coping techniques are utilized most by caregivers tending to an elderly family member? RQ2: How do coping methods further broaden the caregiver’s perspective of their role?
METHODS Population AgingCare.com is a website that provides information for caregivers of elderly family members. The website generates more than 6 million visitors per year, who are, on average, 54 years old and caring for an elderly family member who is an average of 81 years old. According to the website, 83% of visitors are female. AgingCare.com has a section on its website called “Caregiver Stories,” with the following description: Unexpected moments are common in caregiving, whether humorous, inspiring or embarrassing, they happen to all caregivers. Caregiver Stories is a place to share your stories and read other caregivers’ stories.
Since narratives have been shown to be a beneficial emotionbased coping technique for caregivers, the researchers were interested in the manner in which website visitors shared their own caregiving narratives. Visitors had a maximum limit of 400 characters. The brevity of stories compels caregivers to choose their words carefully and only include the most notable accounts of their experiences. This study analyzes stories posted between January 1, 2012, and April 2, 2013.
Classification Schema Recognizing that caregivers experience an array of emotions, Gottlieb and Gignac (1996) created a classification of coping categories based on caregivers of family members with dementia. Adaptability, general distress, and physical health are the three main measures used in the study to examine the relationship between coping techniques, health, and morale. In total, 11 main classes were established, which included making meaning, acceptance, positive framing, wishful thinking, avoidance/escape, vigilance, emotional expression/inhibition, future expectancies, humor, help-seeking, and symptom management. Sample Each individual story serves as a unit of analysis (one data point) in the study, and each story was read to determine whether a stated relationship was present. For instance, a story had to cite whether care was given to a mother, father, husband, wife, or other family member. If a story did not explicitly state the relationship, it was not used in the study. In addition, to avoid duplicate postings, all stories used were from unique user names and therefore individuals. Demographics The authors attempted to identify the gender of the caregivers writing these stories, but very few were identifiable since website users post under a distinct username. Members have profiles, but few disclosed their gender or other personal characteristics. Since AgingCare.com states that most of their visitors are women, it is assumed that most caregivers writing stories are also women, but it was not possible to confirm. In addition, a large portion of the stories do not reference a specific illness or disease. Of those that did, about a quarter (25.3%) mentioned Alzheimer’s disease or dementia, 6% cited a stroke, and 5% cancer. Others mentioned were diabetes, chronic obstructive pulmonary disease, and physical disablement. Analytical Process In total, 155 stories were collected, and 154 stories were evaluated using Gottlieb and Gignac’s (1996) classification scheme. The one story that was not used described the ordeal of an employee stealing money from her mother before she passed away. Since only the details of the subsequent trial were described and the writer’s mother was not mentioned, this was not classified as a story that involved caregiving coping. The constant comparative method, developed by Glaser and Strauss (1967), was used as the primary method for data analysis. As a first step, the authors reviewed Gottlieb and Gignac’s (1996) scheme and discussed how they would
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interpret each class and subcategory. By going through this exercise, the authors were able to articulate to one another how they would assign meaning to each story. Then, every story was read and labeled independently. As many as four classes and subcategories were assigned to each story by each author. In order to ensure credibility of the original scheme, the authors revealed their choices to one another and discussed the rationale for choosing the particular class and subcategory. This process occurred individually for every story. If there was disagreement after the initial review, a discussion took place between the authors. All stories without agreement were marked and set aside. At a later date, the authors reread and individually coded the stories again and began the same process as previously mentioned. Eventually, each story was assigned one primary label that both authors agreed upon. Once all the stories were classified and labeled, individual stories were then reviewed from each class and subcategory to ensure that none were incompatible.
RESULTS Caregiving Coping Mechanism Using Gottlieb and Gignac’s (1996) classification scheme, the most common class of narratives utilized emotion-based coping techniques. Addressing RQ1, which focused on the particular coping technique used by caregivers, the use of humor accounted for 20% of all stories, followed by positive framing (16%) and acceptance (11%). When only subcategories were analyzed, laughter, which falls under the main humor class, was the most cited story classification with 18% of total stories. Only four stories were classified as teases, the other subcategory of humor. Focuses on positives, a subcategory of positive framing, was the second most cited overall classification with 13%, followed by accepts the necessity of continuing involvement (6%), a subcategory of acceptance. Symptom management (11%) was an instrumental coping technique and its accompanying subcategory, physically assists/steers, registered only 3% of all stories. Future expectancies garnered 10% and the subcategory of pessimistic/fearful accounted for 6%. Table 1 lists the top five classes along with their most cited subcategory. Relationship An overwhelming majority (87%) of stories involved people taking care of parents (mothers, fathers, in-laws). More than half of the caregivers who wrote a story were taking care of their mother exclusively (55%). If scenarios of caregivers looking after mothers and additional family members were considered, then 62% of stories involved tending to a mother. Other relationships included taking care of a father (17%), spouse (7%), and grandparents (4%).
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TABLE 1 Prevalence of Coping Class and Subcategory
Class and Subcategory Humor Laughter Positive framing Focuses on positives Acceptance Accepts necessity of continuing involvement Symptom management Physically assists/steers Future expectancies Pessimistic/fearful
Number of Stories
Percent of Stories
31 27 24 20 17 9 17 4 16 10
20% 18% 16% 13% 11% 6% 11% 3% 10% 6%
Category Analysis This section addresses how these coping methods further broaden the caregivers’ perspectives of their roles. The top three categories (humor, positive framing, and acceptance) are examined exclusively. These emotion-focused techniques account for almost half of all entries (47%). By focusing on these narratives through a sense-making context, insights show how caregiving can be a complex, yet enriching, experience. Humor. Typically, one does not associate humor with illness, but it can bring levity to an otherwise serious situation and offers caregivers a temporary sense of relief. Those outside the caregiving role may find these situations shameful or embarrassing, making it difficult to picture the scenarios in a positive light. Yet, caregivers using humor as a coping strategy focus on the silver lining. One caregiver writes1 : Mom sometimes has “turd” issues. The other morning she got up and put on a new pretty blue sundress. I was changing her linens and looked at her side and said. “ aw, mom, you have poop on your dress”. Then I looked closer and said “ no, it’s just brown wooden buttons”. She looked down at the buttons and just cracked up. Then I cracked up. It was so funny. we laughed until we cried.
As the preceding story illustrates, narratives invoking humor can be used as a tool to deal with embarrassing situations. Here, the caregiver assumes the parental role and gently alerts her mother that she may have put on a dirty dress. They can laugh at the situation because in that brief instance, the role reversal is blatantly revealed. Instead of a negative reaction, both women understand one another’s viewpoint and have no other choice but to laugh at where life has taken them. Similar to dealing with uncomfortable situations, stories involving humor encouraged the caregiver to embrace the 1 To maintain the authenticity of participants’ stories, all featured quotes are presented without changes for spelling and grammar.
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illness. In the following story, a caregiver welcomes her unusual role instead of surrendering to the difficulties of the disease:
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I am a part time caregiver to my Mom who suffered a brain stem stroke that left her physically disabled and also has OCD and possible dementia and a full time caregiver to my 16 year old daughter who has mental retardation and OCD -tics-ODD.. When I take them shopping people think I run a group home. When we go out to eat it looks like we had a food fight. I get farted on a lot. But I love it!
The online forum affords this caregiver an opportunity to document a narrative expressing her immense responsibility. Through sense-making, she is able to normalize the chaos experienced in her day-to-day routine and still finds it amusing. Instead of viewing the situation as a burden, errands are portrayed as meaningful events, which provide pride and energy to continue doing them. Sincere acknowledgement is another way to look at how caregivers humorously cope with the effects of disease. In the next example, a mother recognizes the need for her daughter’s assistance while communicating with health providers: saw Mom last night. And was trying to get the RN to understand that Mom cannot relay info to me from the Doc. I told the RN that im Moms POA and the Dr needs to call me with updates. Mom said “ya, have him call her, cause i cant remember sh∗∗ anymore”.. love the uphoric mania days
The mother’s unashamed admission of her poor memory blithely relinquishes the parental role to her daughter. This narrative demonstrates how a casual remark is treated as a communicative device that symbolizes transference of authority between mother and daughter, solidifying their redefined roles. Positive framing. The ability to temporarily escape the arduous role of caregiving to relive happier moments was a salient theme within the positive framing category. Viewing situations with optimism offers caregivers a break from an otherwise demoralizing lifestyle. These seemingly ordinary moments could have easily been overlooked and negatively colored by the disease, but instead, they demonstrate how caregivers are able to block out adversity, focus on memorable moments and re-connect with their family members. One caregiver writes: A delightful day last week. Mom believed the Queen of England was coming for a visit because she heard Mom was not feeling well.. We had a tea party in perfect British fashion all dressed in our prettiest pink finery. I used Mother’s tea set from her childhood and all the special touches HER mother taught us both. What a gift.
The author never mentions the illness her mother is suffering from, nor does she frame the story as a symptom of disease. The word “her” is capitalized for emphasis and
refers to the caregiver’s grandmother, which indicates how important it is to pass on family traditions. In addition, caring for her mother is viewed as a gift rather than a burden. By framing the narrative positively, an extremely meaningful event occurred that linked several generations and enabled the caregiver to experience a slice of her childhood again. The next narrative demonstrates how assuming the role of caregiver assisted in restoring the relationship between a daughter and her mother: My mom has been in the nursing home rehab for over a month now, private room doing very well. She will be staying when she is done. She will be moved to a smaller room with a roommate. She has come a long way and even laughs now, we have laughed together a lot. It has been years since we have done that.
This narrative indicates that it has been difficult for both the caregiver and mother to endure the rehabilitation process. The narrative is used to reflect upon the relationship and to make sense of the progress that has been made. The caregiver is now able to focus on enjoying their current time together and chooses positive emotion words to signify the meaning of their renewed relationship. Narratives in the positive framing category often revealed how caregivers were able to confirm their self-worth and get satisfaction out of providing assistance. For example: My Mom is almost 92 and able to still bathe herself, keep track of her meds, and is living in a retirement facility. I understand everyone has totally different circumstances. It is hard to be responsible for someone else and totally understand if you need to pay yourself. My Mom has me drive her to dentist and doctor appointments. My Mom also likes to go to lunch and this is how she pays me!
This narrative exemplifies how stories can be used as communicative tools to share experiences and to encourage the online community to consider focusing on the positive aspects of caregiving. By utilizing sense-making, the caregiver truly enjoys the time spent with her mother and appreciates her mother’s relative good health while acknowledging that others in the forum may not be as fortunate in their roles and situations. Acceptance. Accepting caregiving duties is a continuous process that evolves as the disease and its effects constantly change. For some, caregiving is a recent development and a new reality one must become accustomed to. Others have been caregivers for an extended period of time but still struggle to find balance. Although acceptance is classified as a positive category, the nature of this behavior slightly skews in the negative direction, especially when compared to humor and positive framing. Although some caregivers may not enjoy the role of caregiving, they understand that if they do not provide care, no one else will. For some people, taking on the responsibility of giving care is
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simply the right thing to do. One caregiver described the following situation: My ex MIL (yes, I said EX) is an assisted living facility and I am her main caregiver . Her two adult children have all but disappeared. She has suffered her 2nd stroke, but is otherwise healthy. She is 79. MD has put her on palliative care treatment. I want a clear conscience when she passes that I have done everything that I should have.
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This caregiver appears to be utilizing the narrative as a device to reaffirm accepting the role of caregiver and to make sense of the situation. She accepts that the responsibility to take care of her mother-in-law has been bequeathed upon her and is determined to do the right thing. Another writes: I have been helping my parents since I was in my twenties due to them being older. In the beginning it was mainly financial but then the last 10 years have been medically. I don’t regret any of it and I know my siblings wouldn’t do it. My siblings still act like she doesn’t need assistance. My father died in 2008, I realize how much he did because since he died I have my hands full.
Having been thrust into being a caregiver, a retrospective sense-making approach is taken, in which the caregiver understands that it was necessary to fulfill the role. Although the story suggests that there is resentment toward siblings, the caregiver willingly assumed the role and is the only family member who understands the devotion necessary to be a caregiver. Looking back upon the last 10 years, the caregiver does not have regret, indicating that this person would do it all over again if he or she could. The next story illustrates the complexities involved with accepting the position of caregiver: I might be different than most. I don’t like my mother as a person. She has not been a support to me when my husband died, or I had cancer, and other things like that. She has always been self-centered. The more I read about Narcissism, the more I realize that is and has been her main problem. Even though I don’t like her, I must love her since I take care of her 24/7. She is 91 now.
Despite a difficult relationship, this caregiver puts aside past transgressions and finds a way to rationalize why she provides continuous care. It is not an ideal situation, but as her mother’s daughter, the role requires that she provides assistance. Despite the ominous tone of the narrative, choosing to use the words “I must love her” is significant because she accepts that in order to provide care, love must be involved.
DISCUSSION This study revealed several positive emotions that emerge from the role of caregiving and how they are used for coping. Interwoven within the sorrow of attending to a suffering family member are feelings of hope and comfort, expressed
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through the use of humor, positive framing, and acceptance. In addition to Langner’s (1995) findings that caregivers for aging relatives feel satisfaction and rediscover a sense of self and an enhanced self-worth, this study finds that caregivers reconnect with family members through the redefinition of relationships and roles as described through their narratives. The results show that although positive aspects of caregiving have been recognized, even more attention is warranted on the subject. Understanding how positive beliefs and behavior can enhance coping skills will make caregiving responsibilities less challenging. Humor is the most employed coping technique. The narratives illustrate that it is not just laughing or making jokes, but a coping mechanism enabling understanding of how to deal with a difficult situation. Sometimes, caregivers face a balancing act that often mimics feelings and frustrations that parents of young children experience (Miller et al., 2008). As the results indicate, caregiving means traditional parent– child norms and expectations must be relinquished. This can be demonstrated through the use of humor as a sensemaking tool as roles are reversed. Similarly, focusing on emotion-based coping strategies allows caregivers to separate rewarding moments from the hardships of their duties. Channeling positive emotions through expressions of narratives helps to facilitate new perceptions of the relationship and the possibility for more meaningful moments in the future. In addition to humor, accepting caregiving responsibility means altering one’s communicative style and adapting to a new familial role. Acceptance serves as a vehicle that helps caregivers come to grips with new circumstances and allows them to move forward, rather than dwelling on losses (Carver, Scheier & Pozo, 1992), while adjusting to a new role. Sense-making allows for a different mind set to emerge because children, spouses, and other family members must disassociate themselves from their familial role and focus on the job of providing care. It has been shown that setting boundaries and detaching from the need to control outcomes is an important balancing technique for caregivers (Carmack, 1997). The detachment technique can only be effectively employed once a caregiver has accepted the new reality. Results of this study show that although a small number of caregivers complained about caregiving chores, they were still dedicated to their family members and understood that providing care was a necessity. In fact, many caregivers were able to reconnect with family members, putting aside past grievances to develop new relationships. Most caregivers chose to positively frame their experiences. This occurred through sense-making and was communicated through the use of narratives that illustrate how caregivers relished the unique experience this time afforded. Similar to cases of bereavement and diagnoses of children’s developmental disorders, sense-making is an effective coping technique for positive framing because it allows stress
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to be replaced with other positive emotions. Therefore, caregivers are able to understand the complexities of their responsibilities and find ways to make the experience as fulfilling as possible. The fact that caregivers chose a positive story about their relationship shows that they are not allowing the disease to infect them and are still finding ways to enjoy time with their family members. Coping techniques like humor, acceptance, and positive framing have not been deeply analyzed because they are usually seen as psychological or sociological variables. Examining coping techniques through a communication framework shows that they are filled with multiple layers that function as powerful coping tools. The ability to communicate complicated emotions demonstrates that a technique like humor is not just laughter, but rather a method used to help caregivers get through the day and appreciate time spent with family members. Coping, therefore, is very much a communicative event because the ways that emotions and language are framed internally become the behaviors in which they are expressed externally. LIMITATIONS AND IMPLICATIONS FOR FUTURE RESEARCH A limitation of this study is using a sample that may be more introspective about providing care than typical caregivers, by choosing to share a story online. Furthermore, in the “Caregiver Stories” section of the website, the description states that stories are usually “humorous, inspiring or embarrassing.” This statement may suggest the type of content that is appropriate, thereby influencing or constraining caregivers to frame their narratives to be consistent with the rest of the online community. Another limitation is that it is not possible to complete an exhaustive analysis without a full demographic portrait of caregiver characteristics. Demographic data would make it possible to determine whether a specific group gravitates toward a unique coping mechanism. For instance, wealthy caregivers may utilize different coping techniques than less affluent caregivers who have to devote more time and energy to giving care. In addition, different styles of coping may also be present due to gender differences or diagnosis. Analyzing less studied individuals, like male caregivers or those who suffer from chronic and autoimmune diseases, may provide new insights into the ways caregivers cope with their roles.
CONCLUSION Despite the emotional challenges, physical limitations, and financial struggles, most caregivers focus on the positive aspects of the role instead of being pessimistic. Through communicative methods, the daunting task of caring for a family member while not becoming overwhelmed with sorrow and stress becomes attainable. Sense-making,
combined with emotion-based coping, allows a caregiver to see through depressing and embarrassing occasions and serves as a reminder that the caregiver’s sick family member is still worth caring for, even if he or she is not the same person he or she used to be. The large percentage of positive coping techniques used shows that caregiving does not have to be a lugubrious task. Through the use of communicative coping techniques, caregiving can be an opportunity to deepen relationships and harvest unexpected rewards, instead of being associated with loss and sorrow.
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