Fostering Coping Skills and Resilience in Home Enteral Nutrition (HEN) Consumers  
* MD Informatics, LLC, Salt Lake City, Utah; Correspondence: Cheryl W. Thompson, PhD, RD, CNSD, MD Informatics, LLC, 629 Aloha Road, Salt Lake City, UT 84103. Electronic mail may be sent to cwthompson{at}hotmail.com. Background: Home enteral nutrition (HEN) is a lifesaving therapy that provides benefits along with countless challenges. This qualitative study examined how HEN consumers learned to cope successfully with HEN-related challenges and uncovered how healthcare providers could help foster the process of coping in other HEN consumers. Methods: Twelve adult HEN consumers who perceived that they were coping successfully and overcoming the adversity associated with HEN, and met the criteria for resilience using the Resilience Scale, self-selected for the study. Participants engaged in a series of 2 in-depth interviews. Data were coded and analyzed using grounded theory methodology. Results: One overarching theme and 5 main categories emerged from the data, revealing that these individuals coped successfully with HEN by developing an attitude of personal responsibility to accept new life conditions, take charge of their own well-being, seek and accept support, maximize independence and normality, and focus on the positive. In addition, these participants used a variety of problem- and emotion-focused coping strategies and shared resilient characteristics such as self-efficacy and perseverance. Conclusions: Implications for clinical practice and HEN education, along with suggestions for healthcare providers to foster coping with HEN are provided. An educational manual with self-help suggestions for adult HEN consumers is also available at http://www.copingwell.com. Home enteral nutrition (HEN) provides the basic physiologic requirements for nourishment while the sensory, social, cultural, and religious pleasures and traditions associated with eating typically remain unmet.1 Further, reliance on HEN elicits a ripple effect that can profoundly influence self-esteem, personal and professional roles, social relationships, and employment. A major emphasis of HEN research has been to examine potential medical complications using biomedical models of disease and deficit models of coping. Although less frequently studied, HEN-related psychosocial concerns can be formidable. Challenges include the inability to eat, mealtime stress, loss of control and independence, negative body image, low self-esteem, depression, grief, interference with sexual functioning, and financial burdens.2–4 Furthermore, HEN consumers report altered family roles, strained relationships, and difficulty with acceptance, compliance, scheduling around infusion times, and finding a support system.5 Using quantitative measurements, HEN consumers often perceive themselves as having a lower quality of life (QOL) than the general US population reports.6–8 Yet, a narrow focus on HEN-related challenges and detriments to QOL can limit one's perception of the full range of potential positive outcomes and the complexity of life experiences. Although many consumers merely survive with HEN, others are able to adapt and cope successfully, and some resilient individuals may achieve an enhanced state of well-being through overcoming adversity. If resilient consumers could articulate the skills, behaviors, and resources that enabled them to cope successfully and ultimately thrive with HEN, then healthcare providers (HCPs) could incorporate that information into educational programs that may enhance adaptation and coping in other HEN consumers. Furthermore, focusing on HEN consumers' maximum potential can promote a shift in thinking from a problem-oriented approach to one that nurtures strengths, such as the "strengths perspective" used in social work10 and the field of positive psychology.11
The purpose of this research was to answer 2 questions from the perspective of HEN-dependent consumers who perceived themselves as coping successfully with their therapy:
Purposive sampling was used to recruit HEN consumers from across the US.
Participants self-selected for the study after receiving notification of the
study by their home-care provider, reading an announcement in a home
parenteral and enteral nutrition (HPEN) support group newsletter, learning
about the study from a friend, or seeing a posted flyer. All participants met
the inclusion criteria of being
Seven male and 5 female HEN consumers participated in the study; all were Caucasian (Table 2). Other than requiring assistance with shopping (n = 2), medication delivery (n = 2), and housekeeping (n = 4), all participants had regained the ability to function independently with basic activities of daily living at the time of the study. The type and frequency of clinical HEN monitoring the participants received varied from no HEN-related medical contact (n = 2) to monthly consultation for tube and wound-care issues (n = 1). Seven participants reported being depressed after starting HEN, and 3 required antidepressant medication at the time of the study.
Data were collected from 3 primary sources: (1) an 18-item questionnaire that requested participants' demographic, psychosocial, medical, and functional ability data; (2) 2 in-depth, semistructured interviews conducted by telephone, in person, or as written responses to interview questions; and (3) supplemental information such as participants' feedback on reviewing interview transcripts and preliminary research findings. Initial interview topics included how HEN affected their lives, what challenges they faced, what strategies were attempted and why those strategies were successful or unsuccessful, what advice would they give other consumers, who helped or hindered their ability to cope with HEN, and how HCPs could foster coping. Follow-up interviews were used to probe further as needed, discuss new topics, and confirm or refute the emerging themes generated during the initial interview process. Including the participants in the process of reviewing the emerging themes helped to verify a common voice. Interviews were audio taped, transcribed verbatim, and analyzed for themes using grounded theory. Grounded theory provided a systematic process for qualitative data collection, analysis, and interpretation.17 Rather than using a preconceived hypothesis, the grounded theory approach used inductive logic to generate themes that emerged during the phases of data analysis. Five major categories emerged that shared a core concept, which represented the overarching theme or conceptual framework describing the phenomenon of how these participants coped with HEN. After all HEN participant data were collected and analyzed, pertinent information was then reviewed by a focus group of 13 healthcare professionals (6 registered nurses, 5 registered dietitians, and 2 other medical professionals). All were employed in acute, home care, or industry settings in the Salt Lake area, with jobs that involved HEN education.
To provide the context of coping with HEN, Table 3 summarizes the challenges discussed most frequently by participants. The overarching theme that emerged from the data was an attitude of personal responsibility. This theme encompassed 5 major categories, representing how participants reported working to resolve HEN-related challenges and cope successfully by striving to (a) accept new life conditions, (b) seek and accept support, (c) take charge of their own well-being, (d) maximize independence and normality, and (e) focus on the positive.
Accept New Life Conditions Starting HEN: When recalling the decision to begin HEN, "[I had] no choice" was the most common phrase whether HEN was initiated after a catastrophic event or due to a protracted illness. One man revealed, "After I had lost 150 pounds, I had to do something. I phoned the doctor and said `let's go with it. '" Another participant cited the responsibility to raise her young children and concluded, "So there was no choice." Feeding tube permanence: The majority of participants (n = 8) accepted that they would require HEN indefinitely, although several described the feeling as "more of a resignation" or made comments such as, "It's all right to hate HEN at times even though it's a needed help." Nonetheless, 4 participants still struggled with the concept that HEN was permanent, as did 2 participants' family members. "My parents have not, to this day, accepted I have a tube. My parents are very resentful of it, and I think that's because they can't accept I'm sick." To some extent, a lack of complete acceptance (that the feeding tube was permanent) helped some participants sustain feelings of hope and optimism. Unchangeable or uncontrollable conditions: An element of acceptance was helpful to cope effectively with conditions participants could not change or control. One woman stated, "You have to accept that you can't always conquer it [HEN], learning to accept all those things you don't have control over." Further, participants had to adjust the overall expectations they had for their lives. One woman conveyed her disappointment: "Letting go of expectations, how I thought things were going to be with a family. I had wanted to be the kind of mom that could take them camping and travel." Physical limitations: The majority of participants faced the need to accept physical limitations such as decreased mobility resulting from their HEN infusion pump, feeding tube, underlying disease, or pain. Despite persistent efforts to maximize their physical functioning, coping with physical limitations often involved altering their activities or accepting assistance from others. Comments included, "[You] can't just will yourself to do everything." and "It's not your fault you're limited; ask for help when needed."
Seek and Accept Support Family and friends: Participants relied on family and friends for emotional support, to foster independence, to maintain a healthy attitude, and to assist with problem solving. Participants explained, "[Family] keep me fighting" and "My wife won't let me become in any way self-pitying. She treats me the same as she did before." Yet, support systems also evolved, and some relationships could not withstand the disruptions associated with HEN, whereas others were enhanced. Spiritual source of strength: To cope with the burdens of HEN, 5 participants relied heavily on their faith and religious beliefs to understand why they were stricken with HEN-dependency, to instill hope, to promote feelings of forgiveness and peace, and to release concerns to a higher power. Statements included, "I think it is my one-on-one with God that carries me." Another participant believed he had "come to peace with myself in why I've been dealt with this problem [HEN]. It doesn't bother me anymore." Support groups and organizations: The majority of participants were involved with a support group or organization. Eight participants were members of the Oley Foundation, which provides education and outreach to HPEN consumers. Comments included, "identifying with someone who has faced the same challenges" and "If they can do it, why can't you do it?" Participants also joined disease-specific support organizations, religious fellowship gatherings, and groups that fostered acceptance and allowed grieving to "let go of the despair." Healthcare providers: Four participants with protracted HEN-related problems (eg, skin-care issues and weight loss) discussed the value of a close relationship with their HCP. Nevertheless, the majority of participants (n = 8) did not think their HCP improved their ability to adapt to or cope with HEN. Ten participants complained of inadequate HEN instruction and reported experiencing confusion, frustration, or fear of the unknown because they felt unprepared to assume the responsibility of their HEN regimen or to deal with complications such as tube dislodgement. One participant recalled her initial HEN instruction: "This is what you're going to take, and that's it, period. I never talked to anybody about it." A few participants reported prolonged feelings of anger toward the medical community: "I don't think I felt the anger so much until I realized that I hadn't had much help from the healthcare industry."
Take Charge of Their Well-being HEN regimen: The majority of participants altered their prescribed HEN regimen to meet their lifestyle or minimize the disruption once they realized "[HEN] can be adaptable." Examples included altering their feeding schedule, infusion time, or number of feedings (n = 10); infusing natural foods or nutrition supplements (n = 4); and simplifying medication delivery (n = 2). Comments included, "That midnight feeding was kind of for the birds." and "There was no reason why I shouldn't use ordinary food as long as it would flow through my syringe tip and G-tube." Another participant rationalized, "I have been told not to mix medications. But I do, and they all get mixed in the stomach anyway." Participants also worked to minimize the physical and emotional disruptions of HEN by mastering skills, increasing knowledge, and modifying their thoughts. Comments included, "... getting [HEN] down to a science where I could have it impact me as little as possible." To minimize the mental impact of HEN, one man advised, "Do not become a slave to the tube." Personal healthcare: Participants took charge of their overall healthcare by collaborating or instigating their own medical decisions, and seeking complementary therapies. One man said, "You have to be in charge yourself.... If I have the opportunity to direct what I'm doing and how I am doing it, I want to maximize that as much as I can." In addition to daily care decisions, some participants helped to choose their infusion pump and skin-care products or the type and location of their feeding tube. An empowered participant advised, "Do not be afraid to challenge the medical profession." One woman explained, "I tried alternative medicine because I was frustrated by the medical community." Solve problems and seek information: All of the participants worked to resolve their own problems by seeking information, using trial and error, and searching for the right equipment or adapting what was available. The need to be self-taught often stemmed from a lack of adequate instruction, resources, or support. "There's no help. You have to kind of `self-help' yourself on the situation." Five participants relied on their primary HCP or wound care specialist for answers, yet others perceived that their HCP lacked the expertise to address HEN-related problems. Ten participants sought HEN-related information from sources other than their HCP, including the Internet, support groups, and enteral-product companies. "I called the [enteral formula] manufacturer and asked what is the best thing to do?" Internal assets: Several personality traits, or internal assets, were common among the participants, including resourcefulness and open-mindedness, a high level of self-efficacy, and being proactive and persistent. Comments included "overcome it or work around it" and "I would say [it took] about 5 or 6 years until I finally figured out what works for me." Advice to other HEN consumers included, "[HEN consumers] just need to know not to give up." and "Check with your doctor as to when your particular tube may need to be replaced."
Maximize Independence and Normality Maximize independence: Participants' motivation to regain independence often arose from the desire for self-reliance, mobility, or freedom; or to diminish the burden on caregivers. Comments included, "[One] motivation was to unburden my wife; the other was to demonstrate to me that I could be independent," and "I was getting very frustrated because it was like sitting and I was stuck.... Being able to have the portable pump has really helped as far as traveling." One participant advised, "In time, learn to feed yourself with the feeding tube. This will help you to return to a new sense of independence." Establish a new normality: The participants described the need to establish "a new normality" because HEN resulted in life changes affecting their employment, social relationships, and activities. Although unable to engage in many previous activities, they substituted alternative hobbies; and 6 participants resumed working full or part time. Some participants were motivated to take constructive actions in part because of frustration (n = 6) or fear (n = 2). Statements included, "tired of not being able to do what you used to do" and "I think fear motivated me—fear of dying, fear of leaving my family without income, not seeing my children grow. I think that motivates a lot of people." Finding meaning and purpose: Engaging in volunteer projects and other worthwhile activities contributed meaning and purpose in the participants' lives. One man stated, "Regaining a passion is an important part of recovery." Nine participants described their volunteer activities for the Oley Foundation, church groups, civic organizations, nursing homes, or research studies. They conveyed a yearning to help others, engage in constructive activities, stay active, and remain involved in their communities. "Volunteering allows a sense of accomplishment, doing something, making a contribution. It is great therapy for someone who is overcoming a disability or HEN." To some extent, activities also served as a coping mechanism that allowed participants to escape or be distracted from unpleasant emotions or physical ailments. Engage in the dining experience: Over time, many participants resumed sitting at the table during family meals (n = 7), going to restaurants (n = 4), cooking for their family (n = 4), and preparing foods to infuse through their feeding tube (n = 3). Most participants strived to return to food-related gatherings, often for the benefit of others. To make themselves and others feel at ease during mealtimes, some participants tried to display their own comfort with the situation or used humor to lighten the mood. "If the person who is affected makes light of it and tries to put the other people at ease, it is very easy." The desire to eat remained a chronic longing. Participants disclosed coping efforts that included using imagination and creativity to engage in the dining experience (n = 4), and privately chewing food and then spitting it out (n = 3). Overcome the Social Stigma: HEN-related physical changes included the tube itself, equipment, odor, and drainage; furthermore, 2 participants needed to expectorate saliva. Seven participants described feeling self-conscious or having an inferior self-image because they were "different," although these thoughts often varied with the context of social interaction, and 5 participants explained how these feelings subsided over time. "You walk along with kind of a crazy feeling for the first 6 months, wondering, `Well, what will people think of me with this tube in my stomach?'... and you get self-conscious." Participants (n = 7) gave conflicting impressions of accepting the physical disruption from HEN while also experiencing periods of feeling self-conscious, hesitating to disclose their reliance on HEN, or disguising their tube or equipment under clothing. They used a variety of strategies to cope with an altered body image and minimize the social stigma, including acknowledging that people rarely noticed (n = 5), rationalizing that their therapy should not influence their self-worth or focusing on the benefits (n = 4), and not caring what other people thought (n = 2). Comments included, "It seems like if they had a problem with my tube, it would be their problem, not mine," and "Most of the public does not know you are tube fed." Other participants advised, "The tube is just another appliance to help us live a normal life," and "... instead of looking at [the tube] as `ugly,' you have to look at it as `helpful.'"
Focus on the Positive Altruistic, grateful, and optimistic: Altruistic thoughts and actions included efforts to decrease their reliance on caregivers, "give back" to supportive family members, and empathize that others' lives were also disrupted because of HEN. "Sometimes I think it's more stressful on [my family] than it is on me." Ten participants appreciated at least 1 benefit of HEN, such as survival, an improved diet, a healthier body weight, or enhanced blood pressure control. Existential experiences were also described (n = 4), such as developing closer relationships, increasing appreciation or shifting priorities in life, or having a heightened awareness to live in the present. "Enteral feeding is a blessing" and "Several things are better. Once you have had a life-altering event, it makes you more appreciative for all of the small things in life." Having a positive attitude and feeling optimistic helped 8 participants cope with HEN. "... one of the most important factors in any kind of recovery from health or any kind of adversity is attitude." One man advised, "Don't concentrate on the fact that you have a tube. Think about more pleasant things." Refocusing and reframing thoughts: Almost all of these participants (n = 11) refocused their thoughts to minimize the negative, or maximize the positive, or both. They advised, "don't dwell on it" (n = 9), and they actively concentrated on what they had rather than what they lacked (n = 5). Furthermore, participants reframed problems as challenges and down-played their own burden. One man said HEN "provides one more outlet for success"; another described life with HEN as "a few restrictions rather than a disability... really not a problem, just an inconvenience." Downward social comparison: HEN was perceived as a relatively minor challenge in contrast to other people's health problems (n = 7) or compared with the medical burdens participants had faced previously (n = 2). The participants reported intuitively comparing themselves to people whose problems were worse than their own, enabling them to view their own situation in a more positive light, which is a coping strategy called downward social comparison. As a medical professional, one participant stated, "I see people that have worse problems than me all day long." Another individual said, "You see so many [people] with disabilities that [HEN] seems small in comparison."
Suggestions for HCPs and Focus Group Feedback
Implications for Clinical Practice According to the findings from this group of resilient HEN consumers, coping successfully with HEN required them to take personal responsibility to accept new life conditions, seek and accept support, take charge of their own well-being, maximize their independence and normality, and focus on the positive. Recommendations for consumers, which were beyond the scope of this article, were compiled into a self-help manual entitled Coping Well with HEN. This free consumer resource is available online at http://www.copingwell.com. Further, findings from these participants indicated many ways that HCPs can help foster coping and resilience in HEN consumers. Key examples for HCPs included (1) providing comprehensive HEN education, (2) promoting personal responsibility and self-management skills, (3) encouraging constructive coping strategies, (4) allowing flexibility of the HEN regimen, (5) facilitating collaborative decision making, (6) identifying and treating mental health issues such as depression, and (7) referring consumers to a support group. The following discussion focuses on the research findings and recommendations pertinent to HCPs.
Provide Comprehensive Education
Promote Personal Responsibility and Self-Management Skills
Encourage Effective Coping Strategies
Allow Flexibility of the HEN Regimen
Facilitate Collaborative Decision Making
Identify and Treat Mental Health Issues
Refer Consumers to a Support Group In contrast to the general HEN population, a remarkably high percentage of the study participants were affiliated with the Oley Foundation, notably because a recruitment notice was placed in the organization's newsletter. Some of the advantages of participating in a support group include feelings of universality from sharing a common experience, receiving practical information, and being inspired by role models. According to the benefits described by participants in this research, HCPs are encouraged to inform HEN consumers about support services and organizations, such as the HPEN and disease-specific organizations that may enhance coping with HEN, their underlying medical condition, or both.
Limitations and Suggestions for Future Research Transferability of the study's findings to more diverse populations is limited because of the research design. The participants self-selected for the study and were not representative of a national sample because only resilient consumers were targeted. As the stress of illness and therapy were often inextricably intertwined, it was not always possible to distinguish the influence of HEN therapy from the underlying disease or other disruptions. Interpretation of study findings was also constrained because retrospective data collection may have been influenced by recall bias, and could not be verified. Furthermore, the cross-sectional study design may unintentionally reinforce the false perception of a static adaptation to chronic disease or therapy. Future studies should consider a longitudinal study design and explore the experiences of the general HEN population. As relatively few qualitative studies have focused on the lived experience of HPEN consumers, additional research would be valuable to understand more fully how clinicians can help to promote successful outcomes.37 Last, interventions to foster personal responsibility, coping strategies, and self-management should be incorporated into existing HEN education programs and evaluated to assess their impact on QOL and other outcome measures.
Despite the best of intentions, the current healthcare services offered to HEN consumers may be inadequate, which further perpetuates the vulnerability of these individuals. To promote coping and resilience in HEN consumers, our findings suggest that HCPs should be encouraged to provide comprehensive HEN education, facilitate personal responsibility and self-management skills, promote a wide range of effective coping strategies, foster collaborative decision-making, maximize the regimen's flexibility to minimize life disruptions, identify and treat mental health conditions, and refer consumers to appropriate support services. Although these interventions can be challenging to implement and integrate into existing educational programs, they are important strategies to maximize independence and foster coping with HEN. Our findings concluded that taking personal responsibility was essential for these participants to cope successfully with HEN. Yet, taking personal responsibility involves effort, the potential for failure, and other risks. Although these resilient individuals were willing to tolerate the effort and risks, other HEN consumers may not be. Additional research is needed to explore the coping processes used by less-resilient HEN consumers. Although not every HEN consumer is capable of attaining the heights of successful coping and resiliency demonstrated by this study's participants, all HEN consumers should be given the opportunity to maximize their own well-being.
Nutrition in Clinical Practice, Vol. 21, No. 6,
557-565 (2006) This article has been cited by other articles:
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Methods
Results
18 years of age, HEN-dependent for 
5 years) permitted time to adapt, master skills, and identify
resources. 
